Hope For Leah

Chad McClellan is organizing this fundraiser.

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Leah is one of only a few children in the world that suffer from a rare genetic condition called SCN8A. Here is her story:
Leah was born a healthy and happy baby.
When we were at Leah’s two-month appointment her doctor was examining her and said I think your baby is having small seizures. Before we knew it she was rushed up to Primary Children’s Hospital in an ambulance. She had a CT scan, a spinal tap, blood tests, urine tests and a 24 hr EEG. They found nothing.
When Leah was four months she had her first tonic clonic seizure. We went to Primary Children’s hospital again. They told us there was nothing they could do. They already ran all tests and everything came back normal. They told us to go home. She still met all the milestones and started rolling, giggling and playing with toys.
One day over night life completely changed for us. Leah started having hundreds of seizures and her body went completely lethargic. We rushed her up to Primary Children’s hospital. They admitted Leah and began seizure medication. We went home and Leah continued seizing even on medication. Leah stopped crying, moving, playing and giving eye contact. We felt like we lost our baby girl. Lots of tears were in our home.
A couple weeks later Leah’s pediatrician wanted her to go back up to the hospital and get more tests ran. They ran more blood tests for genetic and metabolic diseases. They did an in depth MRI looking for any diseases and brain damage. Everything came back normal. They did another EEG and found that Leah was having a seizure every 15 minutes. We then increased the dosage of her seizure medication. We have tried many medications. None of them stopped her seizures. She has been life flighted and put into ICU because of severe reactions to seizure medications.
Shortly after, Leah began to lose her suck reflex. We couldn’t get her to eat so she lost a lot of weight. She then got a G-tube placed. Her feedings are very difficult. She gags a lot and vomits many times a week.
She has begun to develop scoliosis and torticollis. She also has cortical vision impairment.
Leah has an occupational therapist, physical therapist and eye therapist. Her therapists say that she is a princess locked in her tower. She is in there but she can’t get out. Our days with Leah are very busy. We do therapy 2-3 times a day; we show her toys, pictures, feel different textures, read to her, massage her, listen to music and smother her in kisses.
She has the most beautiful eyes. She communicates to us through her eyes.

This experience with Leah has been very hard for us as a family. We have struggles every day, but we know we can get through this together. We have learned that life is so precious. We live life to its fullest every day. We thought we were a close family before but now we are closer than ever. Leah is our little angel.
Thanks to some wonderful people, we were able to have a full genetic workup done for her. They discovered that she has a rare variant on the SCN8A gene. It is comforting to at least, have an identified cause for her condition.
We are looking to raise some funds to get our house ready for her future and to provide her with therapy. We are so humbled by the generousity of so many people.

Thank You for thinking of us!