...this site is for and about----->> Nathaniel
He is the only known person in the USA with Pro-opiomelanocortin Deficiency Disorder (2p23.3) and SIM1 ( 6q16.3) And it seems he is the only person in the world with this combination. Making him truly ONE OF A KIND.
These are BOTH rare genetic disorders and he deals with many life threatening challenges on a daily basis.
None of his Endocrine glands work properly which means He has:
1)Adrenal Insufficiency- A life threatening issue
2)Hypothyroidism- A life threatening issue
These are also classified as auto-immune disorders and therefore he must avoid all and any that are sick, even something as 'minor' to you and I such as a 24 hour tummy bug can and has but him in the E.R.
3)Hypothalamic Disorder which means he cannot control his body's temperature, yes, potentially life threatening too,
4)Hypopituitaryism this is the Master gland and because it is 'abnormal' the rest of his glands don't work at all or not very well.
5)Hyperphagia- A life threatening issue
a constant unsatisfiable appetite that is leading to life-threatening weight gain which can be very rapid even on a low-calorie diet. He MUST be supervised at all times in all settings where food is accessible.Imagine always being hungry and NEVER feeling full.
On top of that a almost NON existent metabolism (and with all that he is on a strict diet of only 600 cal. daily)
He also has Developmental Delays, Hypotonia - Low muscle tone, Sensory Processing disorder (SPD) , PDD/NOS this is on the spectrum and He has many Autistic Issues, Obstructive Sleep Apnea (OSA) and Extended Linear Growth, Trichotillomania
And because of these health issues Momma cannot work outside of the home and so they must live off the limited allotment from S.S.I. and other governmental programs...And There is just no other way for him to get some of the things he really NEEDS.
the money donated to this site will be used for many reasons all to support Nate.
I want to THANK EVERYONE that has helped us so far!!!! I am truly deeply thankful for everything!! Just a few months ago I had a wish-list here of some other things that I thought would be helpful to have and that there was NO WAY that we would ever be able to have the....our 'Ocean of Friends' came thru and we have received all kinds of WONDERFUL things!!!
Supporters can also help by...stopping by his Facebook page www.facebook.com/POMCmomma and PLEASE leave a comment.
Check out our National Website www.pomc-island.com
What a blessing we have in our 'Ocean of Friends"!!!!!
I want to THANK EVERYONE that has helped us so far!!!! I am truly deeply thankful for everything!! Just a few months ago I had a wish-list here of some other things that I thought would be helpful to have and that there was NO WAY that we would ever be able to have the....our 'Ocean of Friends' came thru once again and we have received all kinds of WONDERFUL things!!!
The Very Special Trike was donated to us via The Linkinhoker Family. (bless them!)
We received a NEW iPad and a NEW Laptop!!!! from our Secret Santa!!! THANK YOU 100X OVER!
Nater's suppliments are also being taken care of for us Thru another Secret Santa!!! Thank you too!!
I just want to say a HUGE Thank you to everyone!! you have helped us make it thru the year. It has been quite a rollercoaster ride...or I guess since this is POMC Island ..the waves have been Narley! I received a few ideas and suggestions and so I have made a few adjustments to this page. I have created a 'wish list' and as the items are taken care of I will adjust the site to show you all the results. The first day I set up the wish list I got a message that Nater got the tricycle as a Christmas present and instead of deleting the item I left it as a THANK YOU notice...Thank you again for your wonderful donations and comments of encouragement. I wake every morning thinking of how blessed I am...LIFE IS GOOD EVEN WHEN TIMES ARE TOUGH.
Well...we didnt make enough for the conference. :( and we got a flat tire on our way home from our Dr. aptmnt up in Gainsville and had to tap into the funds for that. and I paid the light bill. *sigh....onward and upward. THANK you all that have supported us and encouraged me...you have helped me be the kinda mommay that I MUST be for my goober-fish.
we are having issues finding a place in town that has even 'heard' of Cooling vests...much less one that will work with medicaid. I spoke to the Dr. about it this past monday and with the cooler weather approacing it is not as urgent as it could be.... I will keep trying and will keep everyone posted. and THANK YOU AGAIN!!!!