Chloe Martin updates us on her son, D'ante Demetrius, who is six and has spinal muscular atrophy.
Chloe here. Chloe Maureen Martin. I am the mother to a little boy, D'ante Demetrius, who is six and has spinal muscular atrophy. I live in Nashville, Tennessee.
Because of his condition, my son cannot walk, nor can he breathe on his own; yet he continues to be a shining star in my life and in the lives of those he meets. He is a very happy little guy who lives life to the full.
My son is homeschooled because his condition is so precarious. Nurses come over every day to help out, which I greatly appreciate. If it weren't for my insurance, I wouldn't be able to afford this care, and he'd be languishing in hospital or institution, which I do not want for him!
I belong to a support group, P.A.S.N.I.C., which is the acronym for Parents Of Special Needs Children. We meet every Wednesday, to discuss the latest news regarding our children. It was through Pasnic that I met my very best friend, Terri Hershey, who has a son, seven-year-old David, who is autistic.
David and my son have since become the best of friends. They look forward to their playdates, so they can have fun like any other little boy. We also look forward to it because we can visit and enjoy each other's company.
Surprisingly, D'ante has managed to stay out of the hospital; yet I'm waiting for that other shoe to drop, that day when his vent sounds the alarm that tells me that his oxygen levels have fallen, or when I see him gasping for air because his vent tube is kinked or blocked somehow.
When D'ante falls ill, it's always a terrifying feeling because I don't know if he's going to end up with pneumonia again or some other awful infection that warrents hospitalization. He doesn't have the strength to fight off illness, so any little germ is cause for alarm for me, even something as simple as the common cold or flu.
With my son, nothing's simple.
Well, the phone is ringing, so I will go for now. I hope it's Terri calling; I haven't seen her this week; I'm beginning to worry about her! Take care, and may God bless you always! I will write in here again soon!
What could do many parents left alone? it is good to have support, we should get together a signing campaign telling those deep pockets Congressmen that it is time to organize a country wide link of parents with children under their care (organized by which disability) and start forgetting Defense contracts.
Karen this is an informative write, and thank you Rockie for the information, the MDA has helped me in many ways as well, so I can attest to the fact that they are great in the things they do, I was able to talk to a cousellor through them when I went to the clinic, and she helped alot
In Christs Love
Michelle~
The terror expressed here is real. The infection issues and ventilator concerns for SMA are also very terrifying for some of the other neuromuscular diseases, such as the Myotonic Dystrophy my wife Bridget suffers from everyday.
The Muscular Dystrophy Association (MDA), which holds a Labor Day Telethon every year, supports, SMA research, equipment purchases such as wheel chairs, clinical trials and support groups.
MDA also hosts various online chat groups (SMA CHAT GROUP, living with the types/forms of SMA, Support.. Concerns & Friendship. Let's share our experiences ....remaining Upbeat & Positive..Come Join Us...All Are Welcome. Hosted by Mary "Pooh"and Rhonda "deebug90." Fri 8:00 PM to 9:00 PM, EST — Third Friday of the month).
MDA is a credible organization who we have dealt with and have helped my wife in many ways. Here is their web address where you can get more info on the 30 or so neuromuscular disease such as SMA that they support: http://www.mda.org/
There are local MDA clinics in many areas of the country where treatment can be obtained, even if one does not have insurance or is not able to afford it. The website or local MDA office can point you in the right direction for support for SMA families, ALS, Duchennes Disease, Myotonic Dystrophy and others. The local support groups of patients, care givers and families are wonderful in my area of metro Atlanta, Georgia, USA.
There are also International MDA offices such as in the UK that offer assistance.
Please do not give up hope. Keep on fighting. You are not alone!
Sorry about hijacking your story here, Karen, but you have just touched my heart with it. I had to add to what you said in case others could benefit with knowing where to find help for SMA and other Muscular Dystrophies. Thanks again, you are a wonderful angel for posting this!!!!--- Rockie
Re-Release! No longer back-listed. Return to the Olde Ways. The hustle and bustle of modern day life has brought many of us to a quick fix attitude.This book is for those of you who are fed up; have looked at your life and your loved ones and realize
