Yesterday I found out that a guy with Congenital Central Hypoventilation Syndrome CCHS ( Mighty Z's disease) died.
Whenever one of my CCHS family members die it is so heart breaking for me. It brings the reality of how medically fragile these kids are.
I know there have been more kids die with CCHS. Back in the day we would get letters in the mail from the CCHS family network not just telling us what was happening in the CCHS world but on the back of the letter who had died that year.
There are three that I knew personally that have died. Their passing has ripped my heart out.
Sean, I met Sean on Myspace he and I talked several times about him beating the odds with CCHS. He talked about the art that he had done in his life.
Tyler, I knew Tyler through his mom Robyn. Tyler was a delight he always had a smile on his face and a crazy hat on his head. Tyler could make amazing art pieces out of everyday material. Even when he was in the hospital Tyler was always creating. I miss seeing all the creativity that he came up with.
Eryka, Eryka has been the one by far that has affected me the most simply because I knew about her the moment the doctors thought she had CCHS.
Eryka was born in Oklahoma just like Mighty Z, and when the doctors thought she had this disease they called me to ask how to help her. They told me at the time that she was being placed in a nursing home for children since her family didn't want her. I remember being so upset on how that her family could give up her. The doctor at the time said he had a feeling that their was a lady that wouldn't let Eryka slip through.
For a year I had my ear to the ground trying to find Eryka and her new mommy. This was at a time where nothing really was done over the internet. There was no Myspace or Facebook to find people and we still got a letter in the mail from the CCHS Family network.
When I finally found Eryka and her new family. Lori and I became fast friends. I held Lori's hand as she learned to care for Eryka. I would bring Zoe over to have play dates with Eryka and we all quickly became a family.
One week before Eryka's death I had gotten another CCHS letter in the mail talking about how CCHS children were having heart pauses and how that we had lost six children due to them. I called Lori and told her since she was never sent letters from the CCHS Family.
That next week Lori called me crying saying that Eryka had passed. Lori said something that day that still haunts me today.
Lori said " I thought that if I worked hard enough Eryka would survive"
That is how we all feel with our special children it doesn't matter if they have CCHS,SMA,CP,CF,MD,MS or whatever.
We think if we work hard enough they will survive, but we all know deep down it doesn't matter how hard we work death is always knocking at our door.