Team Braylynn and our fight against NKH

Braylynn was born on Saturday April 8th and was diagnosed with NKH on April 17th, 2023. With Braylynns diagnosis comes plenty of obstacles. Plenty of hospital stays and doctors appointments. So many medications, some of which insurance refuses to cover. Battles with insurance to get medications on time. The battles of trying to get ahold of all of her doctors or specialists at a moments notice when something seems wrong. The many, many therapy sessions that she works so hard at. The adaptive devices she NEEDS her in everyday day life that insurance won’t cover because they say “she doesn’t need it”. The seizures daily, the developmental delays, the low muscle tone. This may not be normal to most, but it is our new “normal”. This diagnosis has been one of the hardest things we have ever had to go through but we keep pushing. we keep fighting for our girl. No one should ever have to be told that their baby only has a short time to live. The thought of possibly losing her at or before age 3 is heartbreaking. A child should never be given a life expectancy.

This disorder will KILL our babies and the only way we can stop it, is through better treatments and eventually, gene therapy. But due to lack of funds, we aren’t able to receive such treatment. Without the help of the Pharmaceutical companies, the families and friends of those affected by NKH are the ones putting forth the money. Please consider making a donation towards NKH research to SAVE THE LIFE of my beautiful girl Braylynn, and all of the other kids like her.

NKH, or Nonketotic Hyperglycinemia, is a very rare, very horrible and very deadly genetic disorder that affects the brain and nervous system. It is a devastating condition that can have lifelong effects on those who are affected by it, and especially on our children. As a caregiver, family member, or loved one of someone with NKH, the impact of this condition can be overwhelming and heartbreaking. This disorder has taken so many CHILDREN from their families and you can never predict when things will happen, what your baby can or can’t do, and how their life will be.

Each new day is never promised for her, so we will make sure to create the best life possible for Braylynn. To make memories and give her the experiences of a lifetime.

If anyone has questions please feel free to reach out to me, shawn, my mom or my dad and we will answer them to the best of our abilities. Please join us in the fight against the horrible disorder called NKH. You can follow Braylynns journey on [email redacted]tle.with.nkh or our facebook pages: my personal: Caitlin Flinders or our fundraising page: @Braylynnsbucksforbees

Please help me save Braylynn and all other NKH kids like her. This is the only way.

anything amount will help!

we are just so grateful for all of you and your continued support.

❤️/Caitlin, Braylynn, Shawn and Family