Avleigh was diagnosed with the rare disease Pontocerebellar Hypoplasia Type 2 at the age of 2 years old. Even more rare is the gene that is affected giving her subtype D. We have yet to find another child still alive with this subtype to help give us an idea of what Avleigh’s future holds. In addition to that, medical research for that subtype is nonexistent.
Avleigh’s care and treatment has been on an as needed basis. Her muscles throughout her entire body are very tight, so she receives Botox treatments in her hip adductors and oral muscle relaxers for the rest of her muscles. Her organ health is being treated with medical foods and other interventions. She has many therapy sessions and medical equipment to try to assist her in her physical and communicative needs. She’s also on evaluation for feeding tube to help her GI system and administering of food, fluids and medications.
In addition to all the medical struggles on keeping her healthy and with us, insurance mandates what treatment she can get off of what they believe is necessary. Unfortunately some equipment and medications are not on their approved list.
Avleigh is a fighter and her family and supporters will continue to fight along side of her.
Avleigh's Journey 
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