Myron medication & Living with a rare disorder

Hi, my name is Eric Ho. My son, Myron, is a six years old boy. He was diagnosed with Allan Herndon Dudley Syndrome (AHDS) at birth, a rare genetic disorder.

Children with AHDS struggle with brain development and muscular control. As a result, Myron has difficulty performing bodily moments and maneuvering parts of his body as simple as supporting the weight of his head. As Myron grows, he will suffer severe developmental delays and subsequent health complications. For example, he will experience debilitating muscle spasms and epileptic seizures in the future. He was recently recommended to have G-Tube feeding because he has difficulty swallowing. Now he even cannot roll over or sit up by himself. He cannot say a word nor express himself verbally. 

When Myron was initially diagnosed with AHDS, my world collapsed. My wife (Odi) and I have two options - accept the fact of a very low healing chance and give up on Myron, or fight for his survival and a chance of improvement. The decision is tremendously difficult and we know there is a long road ahead of us. I am the family's sole financial support, while my wife spends all her time taking care of Myron.

Myron will require ongoing intensive private therapies and treatments that are mostly not covered by the government. In addition, in the near future, my family will be forced to move to a more accessible home and purchase a wheelchair vehicle as Myron’s size will be too big to be lifted and transported.

We have been tirelessly working with Myron on daily physiotherapy and physical exercises in hope to keep his condition from deteriorating. We are thankful that Myron is always willing to learn new things. Every day, we teach him new things and play with him to keep him active.

We searched and investigated many medications that may help Myron. Currently, we are informed by competent medical staffs that TRIAC (T3 analog triiodothyroacetic acid) is a possible medications that has a decent chance to improve Myron’s AHDS condition. We wish and hope Myron can have an opportunity to try this medication, which is currently at trial testing stage in Europe. We create this
Fundraiser in hope to raise a target of $45,000 for the TRIAC treatment that is not entirely covered by
the government.

We hope you can help this adorable little boy!
Thank you very much and sincerely,

Eric Ho
Markham, Ontario
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你好, 我叫Eric 何志平, 我有一個六歲大的兒子 Myron, 他在出生後不久醫生診斷他有一個罕見的基因系統疾病, 病名的簡稱是 AHDS (Allan Herndon Dudley Syndrome) 

患有 AHDS 的兒童在大腦發育和肌肉控制方面存在困難, 難以進行像支撐頭部重量這樣簡單的身體動作。因此, Myron 發育遲緩和引發其他健康併發症。例如，隨著 Myron 的成長，他經歷肌肉痙攣和癲癇症狀，最近亦因為吞嚥困難而被推薦使用喉管餵食。現時，他自己翻身或坐起都有困難，他不能說一個字不能用語言表達自己。

當 Myron 最初被診斷出患有 AHDS 時，我的世界頓然崩潰了。我的妻子 (Odi) 和我有兩個選擇... 接受治愈機會非常低的事實並放棄 Myron，或者，決意為他的生存和爭取治愈機會而盡力奮鬥。這個決定非常困難，我們知道前面還有很長的路要走。我是家庭唯一的經濟支柱，而我的妻子則把所有時間都花在照顧 Myron上。

Myron 將需要持續的近身治療和照料，而某些治療的費用政府醫療並不能涵蓋。此外，在不久的將來，我們將需要尋覓一個更方便的居所並需要購買特別的輪椅車，因為 Myron 的體型會越來越成長, 而我們將無法抬起和移動。

我們一直不懈地與 Myron 一起進行日常理療和體育鍛煉，希望他的病情不會惡化。感恩地, Myron 是一個乖巧的孩子, 總是願意學習新事物，每天我們都會教他新東西，並和他一起玩，讓他保持活躍。

我們不斷搜索並調查了許多可能對 Myron 有幫助的藥物。目前，我們從醫務人員那裡得知，TRIAC（T3 - triiodothyroacetic acid）是一種新研發的藥物，有機會可以改善 Myron 的 AHDS狀況。我望Myron 能有機會試用這種藥物，目前該藥物在歐洲處於測試階段。因此我開始了這個眾籌活動，希望為政府未完全覆蓋的 TRIAC 治療籌集 $45,000 元的目標。



希望你能伸出援手, 幫助我們可愛的 Myron！
謝謝你,

Eric Ho 加拿大
安大略省萬錦市
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