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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