It’s hard to imagine anything worse than being unable to help your child. For whatever reason, bad things can happen to good people, and innocent children can fall victim to frightening illnesses and conditions that leave the parents feeling helpless. Stephanie Sass knows this pain all too well, and because of her daughter’s rare condition, she’s reaching out for help.
Stephanie’s young daughter Kaylee was diagnosed with Hereditary chronic pancreatitis (HCP), a very rare form of early onset chronic pancreatitis. The incurable condition causes her to live with daily pain, frequently vomiting, and a very strict diet.
“With the exception of the young age at diagnosis and a slower progression, the clinical course, morphological features and laboratory findings of HCP do not differ from those of patients with alcoholic chronic pancreatitis. As well, diagnostic criteria and treatment of HCP resemble that of chronic pancreatitis of other causes.” Kaylee’s mom explained. “The clinical presentation is highly variable and includes chronic abdominal pain, impairment of endocrine and exocrine pancreatic function, nausea and vomiting, maldigestion, diabetes, pseudocysts, bile duct and duodenal obstruction, and rarely pancreatic cancer. Kaylees HCP was caused from the deletion of the PRSS1 gene being "deleted" or missing from her body.”
When Kaylee was born, she had a Duplicated ureter on her left kidney, which only happens to about 1% of the population. Unfortunately, with two ureters draining a single kidney, Kaylee was forced to have her left kidney removed, leaving her with only her right kidney left. Because of this, the young girl is prone to UTIs.
In attempt to make her daughter’s life a little more pain-free, Stephanie created a Gofundme page for her daughter. The hardworking mom apparently makes “too much” for her daughter to be on disability or qualify for state insurance.
“She does not qualify for mine through work and her new medications will cost me close to $450 a month on top of all her follow up and on going appointments out of town, co-pays and travel expenses.” Stephanie explained. “Momma is drained. I am tired of her hurting, we are both tired of crying, and we both miss home. Right now I work two jobs and am missing work at both to be here with her in the hospital.”
Not only is Stephanie absent from work to care for her daughter, Kaylee can’t stay in school with her condition, and their funds are running low.
“Kaylee has pain on a daily basis and misses a lot of school. She is starting to fall behind and I would like to either get her some in home help or stay home with her as much as possible to help with that.”
It is becoming nearly impossible for Stephanie to keep her daughter alive and well without help.
“Kaylee will need much at home on going care for her and a strict diet that only allows her to eat 5 grams a day in fat. Kaylee will be coming home on 4 different medications and a supplemental drinks to keep her going through each day. I would like to be able to stay home with Kaylee as long as I can to help get this diet under control and implemented in my home.” Stephanie said.
This exhausted mom is hoping that her crowdfunding efforts will help make life easier for both her and little Kaylee, so that she can care for her daughter without stress, and hopefully get her on the path to a happier, healthier life.