| Special Needs Awesome Kids Parent Support Group |
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| Kody, age 7, Spring 2003 |
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| God does not give you anything that HE can't handle!" |
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| I thought I would give you some more information on Kody's two main diagnosis. DiGeorge Syndrome or 22q11 deletion syndrome or Vela Cardio Facial Syndrome (VCFS) is a genetic disorder. There are over 180 different characteristics or anamolies associated with this syndrome. To name a few, heart problems (Kody does not have this but tetrology of fallot is common), immune disorder, missing or smaller than normal thymus, and submuccus cleft palate. You can read about this and see a complete list of the anamolies (called the Fact Sheet) on this website www.vcfsef.org/vcf_ref At last count, Kody had close to 50 of the characteristics. I understand that somewhere between 30-40 is common. Hypogammaglobulinemia is sometimes also called CVID or Combined Variable Immune Deficiency. It is one of about 70 or 80 Primary Immune Deficiencies. The immune system, as you know, is what makes you be able to fight bacteria and viruses when you get sick. It is made up of lots of different parts, which would be complicated for me to get into here, but suffice it to say that Kody does not make enough IgG (subclasses 2 and 3 specifically), IgA, and he has 0 IgE. Kody receives IVIG, gammaglobulin by IV, every three weeks in an effort to keep him from getting sick. It takes 1000 blood donors to make just ONE dose of gammaglobulin for Kody, so the next time you see that blood donor mobile be sure to stop in and donate!! To learn more about Primary Immune Disorders you could visit the Immune Deficiency Foundation's website at www.primaryimmune.org |
| More about Kody: His diagnosis are DiGeorge Syndrome, Hypogammaglobulinemia, epilepsy, asthma, GERD, chronic encopresis, generalized anxiety disorder, severely learning disabled with autistic tendencies. Kody is an awesome kid with a huge smile and a heart of gold. I don't want you to think that he is his diagnosis, because he isn't and I don't think of him that way at all. Kody can't read or write, he can't count past 25, and he doesn't know how to spell his last name yet or know his phone number or address. If you ask him how old he is, he won't know to say "8" but he will hold up 8 fingers and then count them. But he loves science and knows lots of things like the species of bats and everything there is to know about them, he knows geology, he knows weather, he can tell you about volcanos and plant parts. He also can take his own blood pressure, he knows how to access his port (although doesn't do that himself, obviously!), he knows how blood works and why his doesn't work (that is how he puts it!). He has been a Batman and SuperFriends fan since he was 2 years old. He loves to go bowling. He can swim underwater like a fish. He doesn't understand why kids tease him at school ( I don't either, why aren't kids taught at home to not do that??) and his heart gets broken easily. He loves surprises, especially planning them for other people. He's funny without knowing he's funny which is, well, funny! Once when our neighbor was having a garage sale they had a huge sign on their trampaline saying "NOT FOR SALE" and I couldn't get Kody to understand that we couldn't go buy their trampaline because it wasn't in the sale, I tried to tell him what the sign said but then he pipes up with "Mom, I can't read words, but I CAN read trampaline!". He is precious beyond words and a blessing from God! |
| Welcome to SNAK Pack! This group is for special needs Moms (and Dads too!). There are many groups that give support for individual diagnosis and medical information but I found as time went on, I knew that stuff! What I needed was a place to come for friendship and support with other parents that understand what life is like with a special needs child. I found that I didn't fit in with other Moms at groups like "MOPS" or even the PTA. My life experiences are not their life experiences and I found that I just could not relate to them at all! In fact, I found myself getting mad at them (obviously it isn't their fault their kid is healthy!) because I'd hear comments like "I don't know what I'm going to do with Junior's preschool, he has his THIRD ear infection this winter!" and I'm standing there thinking "Honey, I can't count the number of ear infections my son has had and even if I could I wouldn't because I'm more worried about the pneumonia's and the osteomylitis'!!" and I hated to hear about how thier kid can read novels at age 5 when my 8 year old can't even spell his own last name. So I decided that starting an email support group for those of us that "get it" would be a great idea and SNAK Pack was born. Today it has about 40 members that daily give support and friendship to each other in ways that I never dreamed of. It is awesome and wonderful! We share, just like "normal" friends do, but to just share with someone that understands the frustrations of talking to insurance companies for 3 hours or what spending the week in the hospital is like or why your child being teased at school for being different hurts so much is just priceless. I think what surprised me most about this group is how much we laugh together. While we do cry and vent and stamp our feet together, we laugh even more. I guess I didn't realize how much laughter I was missing in my life until this group came together. If you are a special needs parent looking for laughter and a safe place to share and vent and whine a little this is the place for you!!!! |
| More about the owner of Special Needs Awesome Kids (SNAK). Diane Schmidt is married to a wonderful supportive man (a terrific dad too!) and is the Mom to 4 and step mom to 2. Besides Kody, she has three daughters, Arika age 17, Kaila age 13 (asthma and allegies) and Samantha "Sami" age 10 (asthma, allergies, dyslexia). Her step children are Jessica age 19 and Roger age 18, they reside in NJ with their mother. Diane and her family live in NW Michigan. |