Here is one of the best cheerleaders ever and he needs your support!!!

https://www.facebook.com/profile.php?id=100083125221312&mibextid=LQQJ4d

Here is a story from another parent. I will add more stories from other parents as we go here but for now, read about another family that needs just a click of your time. One-click of your time could save hundreds of families in PA alone, but let's unite and save our whole country from greedy people. At one time, this country use to be united, let's get back to who we once were. 

This is from a mother pleading her case as well. She is an amazing mom, I met her personally, and there is nothing she will not do for her child.

Jason is my 7-year-old son who was adopted at age 2.5. He was born with Spina Bifida and has picked up many related diagnoses since birth, the umbrella of diagnoses that come with Arnold-Chiari malformation type II. His childhood has been spent attending countless medical appointments, testing, mental health appts, therapies, and undergoing multiple surgeries. His childhood has been different from most, spending birthdays and holidays in the hospital or doctor's office. He has appointments weekly. Navigating through school with a wheelchair, bullied for being in a pull-up. For not being age appropriate. My son is age 7 with a mentality of a 3-4-year-old. I am his best friend and I am his support. I sit outside of his door when he has meltdowns, I take the physical hits when he is hurting, and I get the emotional dumping from him. The nights I cry myself to sleep or get into the shower to just have a min to escape, because he can’t verbalize his needs, or because it’s been a mentally exhausting day and I am just so burnt out from not sleeping. But I do it day in and day out because he is my child. I’ve lost friends, I’ve lost family but it doesn’t matter because he knows I am there. Fighting this battle with the federal government should never be a thing, they don’t see what we do on a daily. Comments from crowds or the public. We take it all in and have no outlet. Please don’t let them do this to those who need this job, to keep their homes, food on the table, and to keep their babies safe. 

Facing some new physical struggles He struggles with tasks that were once easy for him.  He has limited sensation from the waist down. He uses a wheelchair for distances and has braces for his ankles and feet.  One day, he will most likely be wheelchair-bound. But we continue to do PT weekly and promote walking as much as he can handle. He is in speech therapy, as well as trauma therapy. He has a very unsteady gait. He has neurogenic bowel and bladder and wears pull-ups full time. He has a MACE for bowels and gets catheterized every three hours.  He can’t regulate his body temps and can’t be put in the heat for long. Needs ice packs when overheating. Needs Assistance walking, he elopes. Tries to self-harm when he has behaviors. He is grieving the medical changes that are affecting his life.  He takes medications for mood, anxiety, his bladder, sleeping, and UTI preventatives which still happen all the time due to straight cathing. Dehydration because his body doesn’t absorb the fluids he takes in. He understands that things will only get more difficult. With mitochondrial disease, the body doesn’t create its own energy.  His body is working against him always and never seems to catch a break. He also has growth deficiency and dysautonomia, as well as Muscular dystrophy. He is so tough, but having been through so much already, this is taking an emotional toll on him. When he gets sick his body can’t fight it and he is down for days. I am his caretaker, Mom, who knows him better than anyone else, I am his voice, his advocate. I know what is best and am there to support him through it all. A job no “nurse” could do. He is mentally already dealing with being different from his peers and this would just set him back. Not only does he have physical and medical needs he has mental health needs as well. He is Autistic and has DMDD and PTSD. Jason is adopted and has past trauma on top of what his life has thrown at him. His needs were not met and since the day he was in my custody, he has been taken care of in every single way possible. His needs are always before my own. His life is hard enough and taking me out of the picture and having a nurse come in would only hurt him more. I need to attend the weekly appointments. I can’t if I am forced to work a 9-5 job but I couldn’t anyways. I have to take him to and from school, drive him to appts, and what about when he is sick from having a bowel clean out and is needed to be changed every 10 or so mins? Who is going to explain to my son who already has all this going on that his mom has to be gone all day, and that a stranger will be caring for him? Please tell me how they can take this away from us, I was providing care for him long before Covid. Went through many agencies no one could staff us, no consistency and I still had to take off when they did to go to appointments and treatments. Are the people they want with my son going to be safe, do they have the proper training? No!! Attached are his diagnosis they aren’t what defines him but an insight into how medically fragile he is...

- [ ] Migraine without aura 

- [ ] Arnold-Chiari malformation type II

- [ ] Sacral spina bifida with hydrocephalus - open

- [ ] Myelomeningocele

- [ ] Cerebral ventriculomegaly

- [ ] Tethered cord

- [ ] Neurogenic bladder

- [ ] Neurogenic bowel

- [ ] Dizziness  

- [ ] Innocent heart murmur
Chronic headaches

- [ ] Hypertension
Unsteadiness

- [ ] Headache

- [ ] Autism 

- [ ] ADHD (attention deficit hyperactivity disorder), combined type

- [ ] PTSD

- [ ] Nonallergic rhinitis

- [ ] Orthostatic dizziness

- [ ] Short stature 

- [ ] Growth hormone deficiency

- [ ] Restless sleeper

- [ ] Syncope

- [ ] Venous insufficiency of leg

- [ ] Chronic orthostatic intolerance

- [ ] Bruxism (teeth grinding)

- [ ] DMDD (disruptive mood dysregulation disorder)

- [ ] Mouth breathing

- [ ] Mild obstructive sleep apnea

- [ ] Neuromuscular disease

- [ ] Postural orthostatic tachycardia syndrome

- [ ] Mild hypotonia

- [ ] Osteochondritis dissecans, right knee 

- [ ] Mitochondrial disease.

Thank you all for taking the time to read about this family. We all appreciate all of you out there fighting this fight and supporting it. Sometimes people can still amaze me with how they can unite!