It has been a while since I posted, but I have some updates. Today I’m adding another child to my arrow. I am adding two letters for TJ. I have personally known this family for many years and the challenges that they have faced and will continue to face with TJ.
TJ is a fighter, his mom and dad are as well. I have followed his mom’s posts on FB and this little boy has gone through more in his 8 years than any one person should have to face in a lifetime.
TJ’s condition is a bit of a mystery, but below is a list of challenges TJ and his family continually face.
Intestinal failure
Erythromelalgia - Man on Fire Disease is described as neuropathy on fire. Neuropathy has cased him to be burned with 2nd degree burns and no one knew it because he didn’t even cry.
Eosinophilia Gastrointestinal Disease - his body sees the protein in foods as a virus and cause damage to his GI system. He has lived without food since 18 months old using a special formula.
Non verbal
Ataxia - he walks like a new walking toddler
Low muscle tone
Extreme fatigue
Sleep disturbances
TJ suffers from extreme pain that is at times hard to control because he is unable to talk to us. He is on extreme doses of medication simply to function daily.
Due to the intestinal failure he has been dependent on IV nutrition since December of 2017. He gets his nutrition nightly through an IV in his chest which tunnels through a vein into the first chamber of his heart.
Comprised immune system.
Autonomic Dysfunction - his body can not regulate his temperature when he is not in a controlled environment.
Through all of this, TJ is extremely happy and ornery when he feels well.
The other 10 letters, representing 10 children who have fought or are continuing to fight...
“A” is for Addison - DIPG “C” is for Carson - DIPG “C” is for Carter - DIPG “K” is for Kerris - Type 1 Diabetes “A” is for Aunna - Cancer “A” is for Adele - Brain Tumor “I” is for Issac - Cystic Fibrosis “M” is for Marshall - SIDS “T” is for Taisha - Microcephaly “H” is for Henry - Duchenne Muscular Dystrophy
We as a society really need to take a hard look at the numbers. Life threatening childhood illnesses and those kids fighting them need to bring more attention than politicians and professional athletes.
I am honored to add TJ and all of these kids to my arrow. If you wish to follow One Arrow you can check out the Kansas bowsite page or my Facebook page One Arrow.
