Oh God, it’s happening…

Noah continues to learn new things everyday, but we are beginning to notice subtle changes in his speech and behavior in the last couple of months. Our greatest fear is beginning to unravel before our eyes. Noah is regressing.

Noah is 3 years and 6 months old.

He used to count effortlessly from 1-10, but now he skips #6.

He used to sing the full alphabet from a to z (but mumbles l,m,n,o), but now he only starts from q,r,s…).

He used to know all the words to his favorite nursery songs, but now he skips some words.

Noah just started to put 2 words together and has a few full sentences, like “wait, come back”. He just started calling for “mommy” just a few months ago and started calling for “daddy” a couple weeks ago, kind of like Stewie from the Family Guy episode. It’s great how he will run around the house yelling for us at the top of his lungs, but it can also drive us a little crazy.

His high energy is fun and contagious, but the hyperactivity makes it difficult for him to concentrate and interact safely with other people. Biting out of frustration and excitement is a habit that we cannot seem to control. It is almost impossible to take him to public settings without restraining him or gripping his hand to keep him from running away or running into danger.

With Christmas and New Years around the corner, we want to be happy, but it is so hard knowing that our son is dying. Today, Shire announced that they did not find strong supporting results from the Phase II/III Intrathecal Clinical Trial in Children with Hunter Syndrome and Cognitive Impairment (measured with a test that many parents currently on the trial see problems with). This was the clinical trial that Noah missed the opportunity to enroll in last year. It is basically a monthly injection of the same medicine he receives weekly, except directly into the CSF (reaching the brain). This medication and method is not perfect, but it is definitely better than nothing. We were really hoping to give Noah this treatment to buy us more time until Gene Therapy becomes available. However, Gene Therapy will not even be an option unless we can raise the money to fund the clinical trial.

Noah is still a happy and mischievous boy. He loves playing with his baby sister (she is 9 months and beginning to stand assisted now). He loves feeding her and sharing his toys with her.

We are truly blessed to now be surrounded by our closest friends and family. Thank you for your continuous love and support. We don’t know what we would do without you. God bless.

This Christmas, we just want a cure.


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