Some of you may know our family, some of you, maybe not so much. Our family is unique. We are a family blessed with 4 boys, however two of these boys are unique boys. Our 11 year old has an extremely rare genetic disorder called Mosaic Trisomy 16. During the pregnancy I was told he wouldn't survive, he wouldn't live…. But they were wrong. He was 1lb 12oz at birth and now he is 11 years old, still small for his age, ...but the most important thing, he lived! Proved that miracles happen. He does have ongoing issues with his kidneys as he almost died in 2007. And he has pretty bad hearing loss in his left ear, along with sensory issues.
You can read more at NOAH'S STORY ... and NATHAN'S STORY STARTS & NOAH'S STORY (Cont)
Then the addition of baby #3 brought on more medical issues. We didn’t hear “he won’t live,” with him – maybe because they knew I didn’t care, because I would not terminate a child that God had blessed me with.
Nathan was 3lbs 4oz at birth, and he was diagnosed with brain issues, a high closed cleft palate, and various other things… then, after a few years we found out he has a rare disorder called Russell Silver Syndrome. It is a type of dwarfism, or growth disorder, and it causes a lot of issues. Nathan does have a lot of issues, he doesn't grow well - because of this he has daily shots of Human Growth Hormone. We have seen it helping. He has terrible night sweats. He has a really hard time communicating. Usually babies have a wonderful vocabulary by the age of 2 and with Nathan, we are both still getting super frustrated sometimes. Nathan also has sensory issues and was diagnosed with Autism. All these things can be linked to his Russell Silver Syndrome. Don’t get me wrong, Nathan is an amazing child, he is very smart and he can light up a room in a few minutes flat. He also has severe Sensory Integration Disorder ...
Click Here to read a continuation of
NOAH & NATHAN'S STORY CONTINUES ......
It isn’t easy having two kids with medical issues, or four for that matter, cuz Calahan has medical issues and so does Kaedyn, but not like Noah and Nathan... I know – things could be a lot worse. I could have lost them at birth, but luckily, I was blessed with these amazing kids.
Because we put our kids first, we don’t have any savings, we live day to day, trying to make the best of the money we have to spread over the cost we have.
Getting to an amazing conference like the one the MAGIC FOUNDATION is putting on for kids with “SGA” (small gestational age) which both boys have, and most specifically Russell Silver Syndrome, which the DRs have finally settled on, we need to count on the generosity of others. With each year that passes and listening to families talk about what a GIFT it is to go because the kids are always amazed that they have found others that are JUST LIKE THEM. I feel it’s so important to go and to not only have the chance to meet other families, and Nathan meet other kids that are just like him, but to be able to learn and educate ourselves about specific issues that Nathan faces or will face, along with SGA issues for Noah. In addition to all that, we’ll have the opportunity to meet the leading Doctor in Russell Silver Syndrome and maybe getting some line on how to help him better from her expertise. We have been trying to get to this conference since 2011. We always hope.......... next year.
It is important to try to get to this conference, and if we can’t make it this summer, we will definitely keep the money in the bank to save up to go for sure next year.
Nathan just turned 6, but he is only the size of a 2 year old… 28lbs and 38 inches. He’s tiny for his age, but he has an amazing little man! Even though I am hoping to take both boys to the conference – this is more for Nathan then for Noah.
In addition to the conference - there are a lot of expenses that insurance won't cover and we have to pay for out of pocket. Example: Pediasure, a higher calorie drink that Nate needs to drink 3 of a day. Diapers, who knows when Nathan will finally be fully potty trained. Medicine, insurance won't cover some of them, especially those that we can get over the counter, and getting them flavored so he'll actually take it. Gas too and from the clinics an hour/hour & a half or more away (not to mention needing to eat those days.) Then there are the sensory tools we have to pay for. We need to get a Tablet for Nathan. AND we very well may have to get his Alternative Communication Device paid for ourselves - it's already been denied once. And there is the dental work that Noah needs - desperately - that insurance won't cover. Everything adds up, and our money only stretches so far.
Nathan - Insurance is not going to cover his Alternative Communication Device. Our trial with it has proven this is the way to go with him. He caught on super fast and no frustration!! Sadly, the device is over $5,000 out of pocket! We REALLY need help!!
Noah - Braces. Insurance doesn't cover braces. This isn't a cosmetic need to straighten out his teeth, this is a MEDICAL need to fix his teeth, surgically bring down the teeth that are growing horizontally in his jaw, to fix the over crowding and bring out the teeth that came in behind other teeth. His mouth is so messed up. This is also going to be a huge expense. PLEASE HELP!!
Every little amount helps!!!
Any and all donations will be used ON THE KIDS for these items they need. Anything can help and will be appreciated. If you would like a thank you note, please send me your name and address to my email. (click on the email graphic)
If you would like to do a fundraiser for the boys, yourself, please let me know & if there is anything you need.
Here is our fundraiser at Fundrazr .... (click on the picture to be taken to the link)
If you want to make a donation please contact me for the address, or if there is another way (Paypal -the donate button on my blogs - or doing your own type of fundraiser) you want to donate, please let us know!!
The Magic Foundation is also asking for donations - they are raising money to update our RSS Bible! It is a great comfort and a great resource for parents of SGA and RSS and other Growth Disorders.
If you want to read more of Noah & Nathan's stories, please click the links at the top of this page.