15/02: Quick Update
Hello,
Sorry it has been so long since our last update. Just thought I would touch base and let everyone know what has been going on.
The biggest bit of news is that Jasmine started school last week. That has been a very big step and she has handled it remarkably well. Credit to Kim for dealing with all of the drama that has gone with her starting. There has been a lot to look after and I am sure there will be a lot to come and despite some small hiccups so far so good.
Jasmine also had her Make-a-wish late last year. Her wish was to be a Princess for the day. It was a 2 part wish which went over 2 weekends. The first part of the wish was a Princess party. We had this down at my mum and dads place as we needed somewhere to accomodate all the kids plus the jumping castle. Kim, Jaidyn and Jasmine arrived in style in a horse drawn carriage which picked them up from our house in Menai and took them down to Woronora. Once there Jasmine met her favourite Princess Snow White and enjoyed all things pink and princessy. It was a great day.
The next part of the wish came the following weekend where Jasmine was special guest at the Miss Teen Australia Pageant. We all enjoyed a stay at the Stamford Plaza Double Bay where we were very spoilt. WE had a ride around the eastern suburbs in a Maserati, had a lunch, Kim had her make up and hair done and was given a beautiful dress to wear as well as jewellery, Jasmine was given a dress and we had a photo shoot done. We attend the pageant that night where Jasmine was presented with sash and tiara and got to walk the catwalk. It was a great night and Jasmine just loved seeing all of the girls in there pretty dresses.
Again sorry it has been so long since our last update. We will try and update it more regularly in the future. Thanks to everyone who has left a message on the guestbook.
w.
Sorry it has been so long since our last update. Just thought I would touch base and let everyone know what has been going on.
The biggest bit of news is that Jasmine started school last week. That has been a very big step and she has handled it remarkably well. Credit to Kim for dealing with all of the drama that has gone with her starting. There has been a lot to look after and I am sure there will be a lot to come and despite some small hiccups so far so good.
Jasmine also had her Make-a-wish late last year. Her wish was to be a Princess for the day. It was a 2 part wish which went over 2 weekends. The first part of the wish was a Princess party. We had this down at my mum and dads place as we needed somewhere to accomodate all the kids plus the jumping castle. Kim, Jaidyn and Jasmine arrived in style in a horse drawn carriage which picked them up from our house in Menai and took them down to Woronora. Once there Jasmine met her favourite Princess Snow White and enjoyed all things pink and princessy. It was a great day.
The next part of the wish came the following weekend where Jasmine was special guest at the Miss Teen Australia Pageant. We all enjoyed a stay at the Stamford Plaza Double Bay where we were very spoilt. WE had a ride around the eastern suburbs in a Maserati, had a lunch, Kim had her make up and hair done and was given a beautiful dress to wear as well as jewellery, Jasmine was given a dress and we had a photo shoot done. We attend the pageant that night where Jasmine was presented with sash and tiara and got to walk the catwalk. It was a great night and Jasmine just loved seeing all of the girls in there pretty dresses.
Again sorry it has been so long since our last update. We will try and update it more regularly in the future. Thanks to everyone who has left a message on the guestbook.
w.
03/09: USA Trip
Hi Everyone,
Well we are back after our trip to America and what a trip it was. It didn't get off to the best of starts after an 8 hour delay at Sydney Airport (yes we were flying Qantas for those interested) but unfortunately there is not much you can do about that. It didn't take long though for Jasmine to make some friends and before you knew it she had people stopping in the aisle and giving her all sorts of things. We were on the plane with a very large contingent of pilgrims from the USA and we want to thank everyone for there prayers and kind words. A big thank you to Kim and Jackie for basically doing everything that Jasmine told them to do.
Our first port of call when the convention started was to meet with the doctor who was a specialist in Russell Silver Syndrome (RSS). This particular syndrome made up a big part of the convention and was the group that we were in along with families of children that were SGA (Small for Gestational Age). Russell Silver Syndrome was the syndrome that Jasmine was originally diagnosed with so there is a similarity between the two. The doctors name is Dr. Madeleine Harbison and she was very interested in Jasmine. She had not seen a child with Mulibrey Nanism before and thanked us for bringing Jasmine all the way to see her. She remarked that she would have diagnosed her RSS if she had originally seen her. Dr. Harbison was also accompanied by a geneticist from France who took a particular interest in Jasmine. She asked us if we could provide her with some DNA so we are trying to get that to her as soon as possible.
The convention was broken up into different genetic disorders with seminars running that related to each specific disorder and also seminars that encompassed topics that were universal to all children and families that were dealing with a child with a disorder. It was very interesting to attend the seminars that were dealing with children that had RSS and were SGA and notice the similarities in there experiences and those we are dealing with.
We also bumped into a family from Melbourne at the convention. It was good to speak to them and as a result we are going to be seeing a new endocrinologist for Jasmine. Hopefully this will be good as it is always good to have a second opinion.
The convention was a big success and we had a lot of fun in the progress. On the Friday and Saturday nights everyone got together to have a bit of fun. On the Friday night was a sports themed dinner where the kids had a chance to have a boogie on the dance floor. It was great to see everyone having a great time. There was a best dressed contest run for all the kids and as you would probably imagine Jasmine won. I don't know if it was so much the costume as the fact that she was getting everyones attention by showing off her dance moves. On Saturday night they ran a bingo night. It was Kim's birthday that night so we went and had dinner and missed a bit of the evening but by the end of the night everyone had won a prize and the kids had fun.
We are moving forward now and trying to put into place the things that we have learn t while away. thank you to everyone who made the trip possible. We can't thank you enough.
Well we are back after our trip to America and what a trip it was. It didn't get off to the best of starts after an 8 hour delay at Sydney Airport (yes we were flying Qantas for those interested) but unfortunately there is not much you can do about that. It didn't take long though for Jasmine to make some friends and before you knew it she had people stopping in the aisle and giving her all sorts of things. We were on the plane with a very large contingent of pilgrims from the USA and we want to thank everyone for there prayers and kind words. A big thank you to Kim and Jackie for basically doing everything that Jasmine told them to do.
Our first port of call when the convention started was to meet with the doctor who was a specialist in Russell Silver Syndrome (RSS). This particular syndrome made up a big part of the convention and was the group that we were in along with families of children that were SGA (Small for Gestational Age). Russell Silver Syndrome was the syndrome that Jasmine was originally diagnosed with so there is a similarity between the two. The doctors name is Dr. Madeleine Harbison and she was very interested in Jasmine. She had not seen a child with Mulibrey Nanism before and thanked us for bringing Jasmine all the way to see her. She remarked that she would have diagnosed her RSS if she had originally seen her. Dr. Harbison was also accompanied by a geneticist from France who took a particular interest in Jasmine. She asked us if we could provide her with some DNA so we are trying to get that to her as soon as possible.
The convention was broken up into different genetic disorders with seminars running that related to each specific disorder and also seminars that encompassed topics that were universal to all children and families that were dealing with a child with a disorder. It was very interesting to attend the seminars that were dealing with children that had RSS and were SGA and notice the similarities in there experiences and those we are dealing with.
We also bumped into a family from Melbourne at the convention. It was good to speak to them and as a result we are going to be seeing a new endocrinologist for Jasmine. Hopefully this will be good as it is always good to have a second opinion.
The convention was a big success and we had a lot of fun in the progress. On the Friday and Saturday nights everyone got together to have a bit of fun. On the Friday night was a sports themed dinner where the kids had a chance to have a boogie on the dance floor. It was great to see everyone having a great time. There was a best dressed contest run for all the kids and as you would probably imagine Jasmine won. I don't know if it was so much the costume as the fact that she was getting everyones attention by showing off her dance moves. On Saturday night they ran a bingo night. It was Kim's birthday that night so we went and had dinner and missed a bit of the evening but by the end of the night everyone had won a prize and the kids had fun.
We are moving forward now and trying to put into place the things that we have learn t while away. thank you to everyone who made the trip possible. We can't thank you enough.
Another fantastic night was just had last Friday night for jasmine by Bonnet bay Football club. Wayne's (and Jaidyn's)soccer club just put on a Wild west night for us to help raise money for jasmine and they did such a great job! We had an absolute ball and just couldn't believe the support and wonderful people we had there. We are so appreciative of what everyone has been doing and find it really hard to know how to thank these beautifully spirited, kind hearted people! The time and effort put in by everyone was just amazing and it was so much fun!! There was a band and games and auctions and raffles!! I am so honored to be part of this club and just can't put into words how much this means to us and we will forever hold these people in our hearts! Wayne is just so overwhelmed by this and is just as honored as me to be a part of this club and these wonderful people!!
Thank you,thank you!!
We are off to America in 2 weeks so we will have to let everyone know how things went when we get back!!
Kim
Thank you,thank you!!
We are off to America in 2 weeks so we will have to let everyone know how things went when we get back!!
Kim
25/06: 2 Years in Remission!!!
Hi All,
We have had some excellent news since our last update. Jasmine had a scan in May and it was all clear which is a big milestone as she has now been in remission for 2 years. That is a huge step and now means she no longer has to have 'the mask' as Jasmine refers to it. She has been having a CT scan every 3 months for the last 2 years and has had to go under general anaesthetic. Now she will just have to have ultrasounds, still on a 3 monthly basis but it is much easier on her not having to have a general.
While you can never be totally relaxed it is such a huge relief and allows us to now focus on giving Jasmine the best possible future in regards to her genetic condition. Our trip to the Magic Foundation Convention is just around the corner and we are looking forward to meeting some new people and hopefully getting some new information that will benefit Jasmine.
Speak to you again soon.
w.
We have had some excellent news since our last update. Jasmine had a scan in May and it was all clear which is a big milestone as she has now been in remission for 2 years. That is a huge step and now means she no longer has to have 'the mask' as Jasmine refers to it. She has been having a CT scan every 3 months for the last 2 years and has had to go under general anaesthetic. Now she will just have to have ultrasounds, still on a 3 monthly basis but it is much easier on her not having to have a general.
While you can never be totally relaxed it is such a huge relief and allows us to now focus on giving Jasmine the best possible future in regards to her genetic condition. Our trip to the Magic Foundation Convention is just around the corner and we are looking forward to meeting some new people and hopefully getting some new information that will benefit Jasmine.
Speak to you again soon.
w.
21/04: Ruse Tavern Benefit Night
Hi All,
I want to extend a big thank you to everyone who attended and contributed to the benefit night held at Ruse Tavern on Saturday night. Through the sale of tickets to the night as well as raffle tickets and auctions run throughout the night we understand that $10000 dollars was raised.
Organised by Damie, a Ruse Tavern local who has taken Jasmine to heart, friends, family and local residents came together to have a few drinks, play a bit of trivia, have a good dinner and a bit of a dance to help raise some funds for Jasmine. It was a great night and we can't thank everyone enough for there overwhelming support for our daughter.
Regards
Wayne
I want to extend a big thank you to everyone who attended and contributed to the benefit night held at Ruse Tavern on Saturday night. Through the sale of tickets to the night as well as raffle tickets and auctions run throughout the night we understand that $10000 dollars was raised.
Organised by Damie, a Ruse Tavern local who has taken Jasmine to heart, friends, family and local residents came together to have a few drinks, play a bit of trivia, have a good dinner and a bit of a dance to help raise some funds for Jasmine. It was a great night and we can't thank everyone enough for there overwhelming support for our daughter.
Regards
Wayne
Hi Everyone,
It's been a while since our last update but that doesn't mean nothing has been happening. It was such a busy Christmas and New Year period and it is hard to believe it is the end of February already.
Jasmine had her first dance concert at the end of last year and it was fantastic to see her up on the stage. She had a lot of support there on the day and she really loves it. She is doing it again this year and has started doing 'Fab Fours' and 'Fairy Ballet'. She is a bit of a favourite at Planetdance and we would like to thank everyone for there support. When they found out that we had been doing fundraising they wanted to do there bit to help out aswell and are putting on a concert in April. We will keep you posted on that one.
We have done really well with our fundraising and we are all set to head off to the US in July which is great. We are attending the Magic Foundation convention in Chicago which begins on the 24th of July. We are really excited and looking forward to getting as much out of it as we can and hopefully in the process try and give Mulibrey Nanism that little extra bit of exposure. The trip wouldn't have been possible without the generosity of people in the community and those who know and love Jasmine. For those of you who saw the article in The Leader you would have seen the big contribution made by the 'Menai Mongrels'. We would really like to thank them for everything that they did.
Jasmine had her most recent scan on February 14th and the doctors are very happy with the results which is fantastic!!! It is hard to believe that for such a little girl it has been almost 2 years since being in remission. Jasmine will have 1 more CT scan in May and then she will move on to having 6 monthly ultrasounds for the next 2 years. This is great as after having CT scans every 3 months for the last 2 years under general anesthetic the ultrasound is much better for and obviously the less radiation the better. While anyone who has dealt with cancer will identify it is always in the back of your mind but it is great to be able to focus on other things for Jasmine and start to look to the future.
We are starting to put things in place for Jasmine to go to school next year. She will be going to Woronora River Public School which is the same school that her brother Jaidyn goes to. They have been very supportive there and things have already been put in place to get railings and other aids in place to make the school more user friendly for Jasmine. It is a great school which is perfect for Jasmine. Just walking through the school and at the front gate Jasmine is already known by so many kids which should also make things easier as well.
The list of doctors and specialists is evergrowing as well. Jasmine has recently seen a speech therapist, opthmologist and most importantly endocrinologist. The clinical specialty of endocrinology focuses primarily on the endocrine organs, meaning the organs whose primary function is hormone secretion. These organs include the pituitary, thyroid, adrenals, ovaries, testes, and pancreas. An endocrinologist is a doctor who specializes in treating disorders of the endocrine system, such as diabetes, hyperthyroidism, and many others. I put this in because I had to look it up myself to find out exactly what it was that we were looking at.
As a result of visiting Jasmine's endocrinologist they believe that she has Metabolic Syndrome. This is something else we can add to the list of 'Things that make Jasmine unique'. One of the main things for us to consider with this is growth hormone injections. With everything she has gone through there are going to be some benefits from this but obviously resulting side effect as well. Big decisions to be made there.
I think that's about it for the time being. It has been a busy couple of months and there are some exciting things to come so we will make sure our next update doen't take so long.
Wayne
It's been a while since our last update but that doesn't mean nothing has been happening. It was such a busy Christmas and New Year period and it is hard to believe it is the end of February already.
Jasmine had her first dance concert at the end of last year and it was fantastic to see her up on the stage. She had a lot of support there on the day and she really loves it. She is doing it again this year and has started doing 'Fab Fours' and 'Fairy Ballet'. She is a bit of a favourite at Planetdance and we would like to thank everyone for there support. When they found out that we had been doing fundraising they wanted to do there bit to help out aswell and are putting on a concert in April. We will keep you posted on that one.
We have done really well with our fundraising and we are all set to head off to the US in July which is great. We are attending the Magic Foundation convention in Chicago which begins on the 24th of July. We are really excited and looking forward to getting as much out of it as we can and hopefully in the process try and give Mulibrey Nanism that little extra bit of exposure. The trip wouldn't have been possible without the generosity of people in the community and those who know and love Jasmine. For those of you who saw the article in The Leader you would have seen the big contribution made by the 'Menai Mongrels'. We would really like to thank them for everything that they did.
Jasmine had her most recent scan on February 14th and the doctors are very happy with the results which is fantastic!!! It is hard to believe that for such a little girl it has been almost 2 years since being in remission. Jasmine will have 1 more CT scan in May and then she will move on to having 6 monthly ultrasounds for the next 2 years. This is great as after having CT scans every 3 months for the last 2 years under general anesthetic the ultrasound is much better for and obviously the less radiation the better. While anyone who has dealt with cancer will identify it is always in the back of your mind but it is great to be able to focus on other things for Jasmine and start to look to the future.
We are starting to put things in place for Jasmine to go to school next year. She will be going to Woronora River Public School which is the same school that her brother Jaidyn goes to. They have been very supportive there and things have already been put in place to get railings and other aids in place to make the school more user friendly for Jasmine. It is a great school which is perfect for Jasmine. Just walking through the school and at the front gate Jasmine is already known by so many kids which should also make things easier as well.
The list of doctors and specialists is evergrowing as well. Jasmine has recently seen a speech therapist, opthmologist and most importantly endocrinologist. The clinical specialty of endocrinology focuses primarily on the endocrine organs, meaning the organs whose primary function is hormone secretion. These organs include the pituitary, thyroid, adrenals, ovaries, testes, and pancreas. An endocrinologist is a doctor who specializes in treating disorders of the endocrine system, such as diabetes, hyperthyroidism, and many others. I put this in because I had to look it up myself to find out exactly what it was that we were looking at.
As a result of visiting Jasmine's endocrinologist they believe that she has Metabolic Syndrome. This is something else we can add to the list of 'Things that make Jasmine unique'. One of the main things for us to consider with this is growth hormone injections. With everything she has gone through there are going to be some benefits from this but obviously resulting side effect as well. Big decisions to be made there.
I think that's about it for the time being. It has been a busy couple of months and there are some exciting things to come so we will make sure our next update doen't take so long.
Wayne
11/12: Girls night In Fundraiser
What a great night we had last Thursday with our Girls night In. We raised alot of money and everyone seemed to have a great time! We even had a special helper to draw the lucky door prize as well! Jassy came across for a visit and drew the prizes out for us! Thank you to everyone who helped out on the night as well as everyone who came as well!
On the same day jasmines story went out in the Leader and we have had a great response to that as well. I have added the link there if you would like to have a look at that as well. I am looking at seeing if we can get it added to the front of the webpage so we will see.
http://stgeorge.yourguide.com.au/detail.aspstory_id=1099314&class=News&subclass=General&category=General
Anyway we saw her peadiatrician last week as well and we are going to try and concentrate on getting some weight on to her over the next few months. We need to build up her muscle tone up desperately so anyone with any great muscle building recipes for kids let me know! She has a feeding assessment next week with her speech therapist and that is it for this year.
Thank you all once again!
Kim x
On the same day jasmines story went out in the Leader and we have had a great response to that as well. I have added the link there if you would like to have a look at that as well. I am looking at seeing if we can get it added to the front of the webpage so we will see.
http://stgeorge.yourguide.com.au/detail.aspstory_id=1099314&class=News&subclass=General&category=General
Anyway we saw her peadiatrician last week as well and we are going to try and concentrate on getting some weight on to her over the next few months. We need to build up her muscle tone up desperately so anyone with any great muscle building recipes for kids let me know! She has a feeding assessment next week with her speech therapist and that is it for this year.
Thank you all once again!
Kim x
02/12: New Update!
How busy have we been!! This is just amazing the amount of support and generous people we have come across!! So much is happening at the moment regarding her fundraising! We are just finishing up with chocolates so just getting all the money back now and finalising. We have made so much more than expected from that!
Thursday December 6 we have our Fundraising Girls Night In which is where we have a few businesses promoting their products to sell and a percentage will go to Jasmine as well as a lucky door prizes and champas and a good girls catch up while we shop! We have been so overwhelmed with help for that as well! We have been donated so many fantastic prizes that we are now as well going to hold a raffle for her as well! So busy! Someone said to me be prepared to work your hardest you ever have when we started this and it is so true!!
Couldnt have done this though without the help we have been given and my wonderful sister Julie who has given me so much of her time to us! She keeps me in control and on track when I start to lose it! I cant believe the amount of work she has done! She is a trooper! xxxx
We have been regularly in contact with a wonderful woman in Finland who has mulibrey nanism as well. She has been so kind to send us photos of herself growing up and sharing her stories with me of how she felt when she heard she couldn't have children and how her life has been dealing with that. We are lucky that this woman has shared so much with us and really makes me feel we are not too alone in this. I am happy to be able to pass this information on to Jasmine when she gets older and can only hope jasmine can grow up with her wonderful outlook on life and her intellect and she is stunning! I am hoping to be able to put a couple of her piccys on the website as well if she will let us! She is just an amazing woman! She married a man with mulibrey nanism and they have a beautiful love story! She has also been lucky enough so far not to have developed any of the ovarian tumours as well and i pray everyday that she is blessed not to have to deal with that. Her name is Pirjo and she is now 30 and in the process of adoption and i really wish them all the best!
Jasmine is doing well! She has her first dance concert on the weekend on the big stage and I am hoping to be able to send through some photos for the site so look out for those! I think I will be shedding a few tears that day.so does Wayne!
She has had so many doctor appointmets this past month and we are getting to a point where it is just gont too crazy! It did run her downa bit and she has battled with a bronchial and sinus infection over the past couple of weeks but she is finally getting back on track. All appointments have been good so thats a bonus in the end! She was funny we had a speech therapy appointment the other week and on that same mornng she had a 2 hour physiotherapy appointment as well as three other doctors throughout the week so she was over it!! by the time the SPEECH therapist came she worked out what she was there for and refused to talk!! How do you have a speech therapist analyse you when you refuse to talk! It took a good half hour to get her to say anything! It wasnt funny at the time but it is when you look back at it, she is too clever that girl!!
Anyway i better go. Thank you all again!!
Kim x
Thursday December 6 we have our Fundraising Girls Night In which is where we have a few businesses promoting their products to sell and a percentage will go to Jasmine as well as a lucky door prizes and champas and a good girls catch up while we shop! We have been so overwhelmed with help for that as well! We have been donated so many fantastic prizes that we are now as well going to hold a raffle for her as well! So busy! Someone said to me be prepared to work your hardest you ever have when we started this and it is so true!!
Couldnt have done this though without the help we have been given and my wonderful sister Julie who has given me so much of her time to us! She keeps me in control and on track when I start to lose it! I cant believe the amount of work she has done! She is a trooper! xxxx
We have been regularly in contact with a wonderful woman in Finland who has mulibrey nanism as well. She has been so kind to send us photos of herself growing up and sharing her stories with me of how she felt when she heard she couldn't have children and how her life has been dealing with that. We are lucky that this woman has shared so much with us and really makes me feel we are not too alone in this. I am happy to be able to pass this information on to Jasmine when she gets older and can only hope jasmine can grow up with her wonderful outlook on life and her intellect and she is stunning! I am hoping to be able to put a couple of her piccys on the website as well if she will let us! She is just an amazing woman! She married a man with mulibrey nanism and they have a beautiful love story! She has also been lucky enough so far not to have developed any of the ovarian tumours as well and i pray everyday that she is blessed not to have to deal with that. Her name is Pirjo and she is now 30 and in the process of adoption and i really wish them all the best!
Jasmine is doing well! She has her first dance concert on the weekend on the big stage and I am hoping to be able to send through some photos for the site so look out for those! I think I will be shedding a few tears that day.so does Wayne!
She has had so many doctor appointmets this past month and we are getting to a point where it is just gont too crazy! It did run her downa bit and she has battled with a bronchial and sinus infection over the past couple of weeks but she is finally getting back on track. All appointments have been good so thats a bonus in the end! She was funny we had a speech therapy appointment the other week and on that same mornng she had a 2 hour physiotherapy appointment as well as three other doctors throughout the week so she was over it!! by the time the SPEECH therapist came she worked out what she was there for and refused to talk!! How do you have a speech therapist analyse you when you refuse to talk! It took a good half hour to get her to say anything! It wasnt funny at the time but it is when you look back at it, she is too clever that girl!!
Anyway i better go. Thank you all again!!
Kim x
04/11: Jasmine Update
hello!
Well another scan down and waiting waiting for results! Jasmine had her November scan on Thursday and we have an oncology visit on monday afternoon. So we are hoping no news is good news! Will keep you posted!
We have had such a great response with the chocolates we have started for jasmine's fundraising and hoping to do a benefit night as well. We are overwhelmed by everyones help with the chocolates and generous donations! We actually feel positive enough to finally strt looking into flights for America as we feel it may happen this time!
Wayne has been typing away for us and keeping everyone updated and I thought while I had a moment I would type and give everyone a big thank you for all their support and kindness! We appreciate it so much!
Take care
Kim xx
Well another scan down and waiting waiting for results! Jasmine had her November scan on Thursday and we have an oncology visit on monday afternoon. So we are hoping no news is good news! Will keep you posted!
We have had such a great response with the chocolates we have started for jasmine's fundraising and hoping to do a benefit night as well. We are overwhelmed by everyones help with the chocolates and generous donations! We actually feel positive enough to finally strt looking into flights for America as we feel it may happen this time!
Wayne has been typing away for us and keeping everyone updated and I thought while I had a moment I would type and give everyone a big thank you for all their support and kindness! We appreciate it so much!
Take care
Kim xx
Hello,
It certainly has been a while since our last update and quite a bit has gone on - especially recently. On the Oncology side of things Jasmine is doing extremely well. She has another scan in November and that is the last of her 3 monthly scans. After that it will be 6 monthly and that will be a welcome relief. It is hard to believe it has been 18 months since see has been in remission!!
Jasmine's Journey which is the story Kim wrote to kicked this whole thing off was recently published in a compilation of stories for the Magic Foundation. The Magic Foundation (which you can find a link to on this site) is a foundation set up for families and those people who are living with genetic conditions so to get acknowledgement from them and to reach other people has been quite a thrill and an accomplishment. As well as this, as a result of the story in Take 5 Magazine, the article will also be in Best Magazine in the UK. The article comes out at the end of October so it will be very interesting to see what kind of a response that will get. The more we get it out there the more we are hoping to find out about the condition.
We have received some other information from the Genetics Department at the Sydney Childrens Hospital in regards to Jasmine's development and we are hoping to put some links to the articles and information on the site. It is information that we had previously not been aware of and are hoping to create more awareness for the future. As a result we are hoping to raise some funds so that we can get to America for the annual Magic Foundation Conference that is held in July each year. At present we are doing fundraising by selling chocolates and we have been overwhelmed by the support and help that people have given us. Please keep an eye on our website as we will be posting updates on how the fundraising is going and how you might be able to help us.
Kim has also been in touch with the leading pediatric endocrinologist in Finland and been able to get an email contact for a young woman in Finland who has this condition and it will be very interesting to find out more from someone who actually has the condition and has lived with it growing up.
As I said at the start it has been a while and things are just starting to get rolling in regards to getting some awareness and information on Mulibrey Nanism so keep posted to the website for all the latest updates and on how you might be able to help us reach the Magin Foundation Conference in July 08.
Regards
Wayne
It certainly has been a while since our last update and quite a bit has gone on - especially recently. On the Oncology side of things Jasmine is doing extremely well. She has another scan in November and that is the last of her 3 monthly scans. After that it will be 6 monthly and that will be a welcome relief. It is hard to believe it has been 18 months since see has been in remission!!
Jasmine's Journey which is the story Kim wrote to kicked this whole thing off was recently published in a compilation of stories for the Magic Foundation. The Magic Foundation (which you can find a link to on this site) is a foundation set up for families and those people who are living with genetic conditions so to get acknowledgement from them and to reach other people has been quite a thrill and an accomplishment. As well as this, as a result of the story in Take 5 Magazine, the article will also be in Best Magazine in the UK. The article comes out at the end of October so it will be very interesting to see what kind of a response that will get. The more we get it out there the more we are hoping to find out about the condition.
We have received some other information from the Genetics Department at the Sydney Childrens Hospital in regards to Jasmine's development and we are hoping to put some links to the articles and information on the site. It is information that we had previously not been aware of and are hoping to create more awareness for the future. As a result we are hoping to raise some funds so that we can get to America for the annual Magic Foundation Conference that is held in July each year. At present we are doing fundraising by selling chocolates and we have been overwhelmed by the support and help that people have given us. Please keep an eye on our website as we will be posting updates on how the fundraising is going and how you might be able to help us.
Kim has also been in touch with the leading pediatric endocrinologist in Finland and been able to get an email contact for a young woman in Finland who has this condition and it will be very interesting to find out more from someone who actually has the condition and has lived with it growing up.
As I said at the start it has been a while and things are just starting to get rolling in regards to getting some awareness and information on Mulibrey Nanism so keep posted to the website for all the latest updates and on how you might be able to help us reach the Magin Foundation Conference in July 08.
Regards
Wayne
