More angel wings...

I had a blog that was almost finished but yesterday morning I received news that one of our sweet girls, Allie, had passed away at the age of ten. Just one week ago our community gathered together in Chicago with joy. As a community, we sent well wishes and messages of strength to Allie and her family. These messages haven’t even reached her parents yet.

This disease makes me angry…I am tired of children dying. There is nothing that prepares one for the death of a child. I have dear friends that struggle to put their lives together after the loss of their child. Each new loss in our community ripping the bandage off the freshly healed wound.  If this only happened occasionally, then wounds would heal, but it doesn’t…it happens more than it should…more than one hundred times over the last eleven years.

I love our community…people rally around one another in both good times and times of sorrow.  We celebrate the smallest of victories, the smallest of improvements and bring perspective and support when struggles hit.  Although I am considered “an experienced parent,” I, too, needed a little perspective around our most recent event, Javad’s seizure. It has been a challenging time…slow improvement that sometimes seems that it is not moving at all! I was told to remember that it took him a long time to learn skills the first time, it will take time to relearn them. In our “world”, which is a small number of cases, but impacts people all around the world, information is critical!

I am not sure what our future holds…there are great strides being made in research and it is feasible that there will be members of our community who will participate in clinical trials in the near future. My son, at 13, will not be in this first round…he may not even be in the second round, but I have always been clear that this isn’t about him. Maybe some will find that odd, but, at 13, there have been impacts on his body…contractures in his knees, overall comfort at being in his chair. This work is for those who are little…the sweet boy Mateo I just met at the conference, Grayson, who I held and rocked, and so many others. There are families who know they are carriers and this is for them…freedom in having children where a treatment is available.

Don’t get me wrong…my son will benefit too. My hope is that he will be stronger, will breathe easier and, ultimately, live a long and full life. That is where we benefit. This is my dream, but for now…my dream is that no more families have to buy tiny caskets for their sweet angels. No more angel wings being gained by gentle souls. No more…I am tired…and I haven’t even lost my son (knock on wood)…I can’t even imagine how tired I would be if I had.

For you, my der friends, I send you strength…I wish I had more to give you. Love is all I have.


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