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| EntryNo: |
63 |
| Date: |
Saturday
03:20
19.06.2010 |
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Helga |
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Dear Kim and Jázmin,
My name is Baloghné Domokos Helga and I live in Europe, in Hungary.
I was very glad when I found you on the net because I have a daughter, who was born on 8th of August in 2009 at the 33rd week of my pregnancy. She was 720 gramm and 31 cm. She is also called Jazmin.
Three month later after her birth, we were allowed to go home from hospital to our other healthy daughter.
Jázmin is now 3.5 years old, 75 cm and 5.5 kg. For many months, the doctors didn’t know why she didn’t grow and they also suspected the Russel-Silver Syndrom. Meanwhile Jázmin got epilepsy, not at serious level although she need medicial treatment. Fortunately, there was not any other complication.
We have problems with her physical condition, she does not eat enough, her nutrition is not good enough.Her bones are very light and her muscles are very weak.She is not able to sit, walk and stand.She has got all her teeth, but she does not use them. The doctors suggested feeding her by tube.
Her speaking did not develope,she can perform only the sound ’A’. Otherwise she is very perceptive, she understands a lot of things, calm and cheerful.
Since her 6th month, I have been taking her three or four times a week for special physiotherapy and early development. She does not growing well and our genetic doctress thought it is not RSS and searched the answer.
After that, there were other medical examinations ( liver, eyes,muscle, brain).The results confirmed the Mulibrey Syndrom.The results were sent to Finnland but we have not got any reply yet since 2009.
I would thank if you could help us telling what way we could go on. I feel we got stuck.What were you suggested helping Jazmin’s growth? How is Jazmin and where is she in her growth?
I read that you are in touch with the parents of the american boy, who also has Mulibrey. If you mention them our case, I would be pleased if I could be contact with them.
You meant hope to me when I found you. It is interesting that this illness is very rarely but it found us.
I look forward to hearing you!
Helga and Jázmin
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| EntryNo: |
62 |
| Date: |
Saturday
07:46
08.08.2009 |
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Jessie Wilmott |
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Hello Jasmine! My son Tristan has the same condition as you. We would love to talk with you and your family and hear about your experiences. Feel free to email us.
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| EntryNo: |
61 |
| Date: |
Thursday
12:40
25.06.2009 |
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Selina |
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Hi there,
What a beautiful and vibrant young lady you have, she's just lovely!
I work as a medical researcher at the Children's Cancer Institute Australia on neuroblastoma which is how I came across your story. I was so encouraged to hear of the supportive medical assistance you recieved and would like you to know that there is work being done in our team to better understand childhood cancer and find new ways to treat it and minimise the side effects of current treatments. My heart is with you in your struggle with this rare condition of Mulibrey Nanism and I thank you for your openess to share your experience. I'm so glad Jasmine has coped so well with all she has had to face. She is an inspiration!
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| EntryNo: |
60 |
| Date: |
Thursday
03:59
05.02.2009 |
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Allison |
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 ... I was doing some research on Russell-Silver Syndrome (because the little boy I watch has it) and I found your page. Your daughter is so pretty and full of life. I bet she brings much joy to your life. I just wanted to say Thanks for making this website and allowing us to read about your and her journey.
Your family is in my thoughts. Best wishes to Jasmine and your family.
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| EntryNo: |
59 |
| Date: |
Friday
08:51
16.01.2009 |
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Jasmine |
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I was trying to think of names for my own website when I came upon yours. What a gorgeous Jasmine! It's always nice to know I share the name with great people like your daughter. I can tell from her pictures she has a really cute personality! I'll be praying for your family, good luck.
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| EntryNo: |
58 |
| Date: |
Monday
11:47
05.01.2009 |
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Lynette Symonds |
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..my thoughts and my heart is with you all in this Journey ..your story has brought alot of tears and heart ache for you all..i my self have been there at sydneys childrens hospital wating for hours on end for a diognoses for my little girl Brittany..but nothing as awefull as what u all have been threw..Jasmine has given me alot of strength by just reading about her courage and determination to be well. I shall pray for your lil Angel to get stronger and may all her dreams come true..you both are such amazing Parents..i think thats why god chose you both to parent her...may you stay strong always..you are in my thoughts always..love and hugs ..Lynn xox
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| EntryNo: |
57 |
| Date: |
Friday
19:22
28.11.2008 |
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Meeghan Lillington |
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Hi Kim and Wayne, The two of you are sooo amazing!!! What a beautiful family you have and I am sure you have many wonderful days and years together. Jasmine is such a beautiful and full of spirit young girl and you can see that with the sparkle in her eyes. When I come to Sydney next I would love to meet the family. I look forward to speaking to you guys soon. Love Megsie
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| EntryNo: |
56 |
| Date: |
Thursday
10:00
02.10.2008 |
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Kym, Garry and Jack Atkinson |
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Greetings,
What a very beautiful young lady. (I am typing for my Kym)
We wish you all the best.
Love Garry, Kym and Jack 
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