Today Is Awareness Day For Congenital Disorder Glycosylation “CDG”
My Son Was Diagnosed Last August With Type 1B After Weeks In The Hospital With No Answers To Why He Had A Massive Stroke And Many Other Thrombosis Throughout His Body. After Seven Weeks In The PICU I Requested To Have Another Genetic Testing Done. That’s When I Met The Best Geneticist, Mrs. Monteleone. She Rushed A Whole Econ Study “WES” To Come Back Sooner Than 2-4 Months. One Week To Be Exact Is When We Got... The Results Back…
Type 1B Is Treatable By Taking D-Mannose Every 4 Hours For The Rest Of His Life” It’s A Very Rare Disorder. He Makes The 23rd Person World Wide Known Case To Have This Disorder. He Is Definitely My Special Unique Miracle Super Jace.
If Jace Had Been Properly Diagnosed Three Years Prior To All Of This, He Would Have More Than Likely Not Had A Massive Stroke And All The Other Issues That He Had Gone Through.
The Supplement D-Mannose Required Every Four Hours For Jace To Take, Unfortunately Insurance Will Not Cover It Because It’s Not Considered As A Medication. But To Jace And Myself, It’s A Medication Required To Treat By The Doctors. We Are Still Fighting With That.
With All That Said, Jace Has Come A Long Way. He Has Regained Most Of His Strength, Learned How To Walk And Talk Again. Still Some Struggles But Not Many Would Notice. He Lives With Just About 45% Brain Damage And Right Side Peripheral Vision Loss. He Is A Very Determined Boy And He Won’t Let Anything Get In His Way.
We Love You Jace!!!!
Lol He’s Not A Happy Morning Person
#SuperJace #WorldCDGDay #JaceStrong #CDG
Jace Strong "Jace Neill"
I am the triplet sister to a wonderful mom to a handsome blue eyed amazing boy name Jace Neill. I am setting up this GoFundMe page to help raise money for my nephew Jace who is in critical condition and his parents which is my sister Kaylin and her husband Michael. Sunday August 13th Jace wasn't feeling good, his mother had taken him to the doctor two times that week and doctors said his headache was a sympton from strep and possibly mono. Well Sunday evening Jace had slept more than usual kept saying his head hurt so Kaylin took him to urgent care and within minutes they recommended her to rush to the ER. Once they got there, within minutes Jace had a hemorrhage and a massive stroke. He had to have emergency brain surgery. They took part of his cranium out to relieve the pressure on the brain and has had a massive stroke, and a Subarachnoid Hemorrhage. He has a dural venous sinus thrombosis - its a blood clot that creates a blockage in the dural venous sinus in the brain. Which led to a Subarachnoid hemorrhage which caused a massive stroke. The Subarachnoid hemorrhage is a vein that burst in the brain; with pressure of the subarachnoid hemorrhage it caused a massive stroke. The stroke damaged three different portions of the brain. The temporal, parental and occipital lobes. In order to save his life, the doctors had to perform a craniotomy to relieve pressure due to brain swelling, meaning they removed part of the cranium. While on operating on Jace, they removed a portion of the damaged brain tissue. I’m wanting to raise money for Jace and his family, as they all will be in the hospital for months on out.
This is to help pay for needed equipment and his future therapy care. He will news also speech, OT, and physical therapy. He has a long road of recovery ahead of him.
Lets please contiune to pray as we are in desperate need of prayers. Little man is a strong guy, he is my superman and I pray he heals quickly so we can sing together again very soon. I love you Jace Remington ..... I love you to the moon and back mostest x 100 x 1000 x infinity. Kaylin Nicole Neill your a strong mother, this is hard to see and have to go through and I want you to know you are one heck of a woman .... u are strong and with all of our prayers and Jace being such a fighter, we will all get through this. He will be singing soon Jesus Loves Me. Prayers needed for Michael Neill and Kaylin and family and friends. Continue With Prayers As He Is Still In Critical Condition, I love you my superman.... your a fighter and you are a strong little man. I love you Jace.
- Patrick Crutcher
- Amanda Davis
- Tyler Moon
- Patricia deVarennes
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