Love for Lexy


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Love for Lexy

Lexy lives in Exeter , NH. She is an amazing 4 year old girl with Alexander’s disease, a leukodystrophy. She was diagnosed with leukodystrophy at 18 months old after a horrible seizure lasting over 2 1/2 hours!

She then went through 1 1/2 years of type testing to be diagnosed specifically with Alexander’s disease. Alexander’s disease is a very rare genetic disease affecting the white brain matter. It is progressive and terminal. There is currently no cure. She is 1 of 50 children living with this disease in the entire world. Some of her challenges include Cerebral palsy, epilepsy, very low muscle tone, trouble swallowing (requires a g-tube to supplement needed calories and must drink only thickened liquids) & has a global developmental delay. She is unable to walk or communicate with words, and requires a wheelchair for mobility.

Lexy has numerous medical and therapeutic appointments weekly. She gets botox injections every 3-6 months to help with her tight heel cords. Mommy has chronic back trouble and is currently lifting Lexy as well as her wheelchair, in and out of their high mileage minivan. (ouch!) Her wheelchair takes up two seats as it cannot be folded with all of her supports in place. This make it impossible for this family of 6 to travel anywhere all together. (Lexy being the baby sister of 3 brothers, you can see why she is the princess!) Lexy and her family are in desperate need of a wheelchair van. We were introduced to Annies Angels by our pastor at church and we are partnering with them to help us in our fundraising efforts. Your donations are tax deductible! Please consider helping to get this amazing little girl what she needs and deserves! It is important for her quality of life. Despite having gone through more in her 4 years than most have in a lifetime, she always has a smile on her face and warms the heart of everyone she comes in contact with. You can stay updated on Lexy’s journey by “liking” her facebook page “Love for Lexy”.

Please contribute today. Thank you for your help!