Alejandrina Najera

Ali is a 19-year-old with big dreams. Right after Ali’s 8th birthday, she was diagnosed with a rare progressive neurological disease, ANAD/PLA2G6. There is no cure or treatment for this disease, only treatment of symptoms which has been done for 12 years. Due to the ANAD, she has Pervasive Developmental Delay, Spasticity, Leg Contractures, Anxiety, and Dystonia. Her leg contractures are at the knees so her knees stay permanently bent and her family has to use pillows in the bed to keep her comfortable.

Ali is a fun-loving girl who loves cutting confetti. She has dreams of starting her own confetti business and getting rich so she can take care of her family. She loves going to school and loves everyone she meets. Even with everything she goes through Ali is always smiling and loves making people laugh. Aside from cutting confetti spending time with her family is her favorite thing to do.

Ali is completely wheelchair-bound, she is unable to move her legs on her own. She is losing strength in her arms making it harder for her parents and grandparents to lift her in and out of the vehicle. It also causes her extreme pain when she is lifted like that, so she does not get to go out and do things with her family as much as she or they would like. She is getting a g-tube on April 30, 2024, as she is unable to drink by mouth safely except for small pleasure sips and she will soon lose the ability to eat by mouth. She has lost trunk control so her upper body leans to the left, which makes it hard for her to sit in a regular vehicle seat comfortably even with pillows there to prop her up on the arm of the chair.

Ali is fundraising for a wheelchair-accessible van. The quotes Ali and her family received for wheelchair-accessible vans ran from $60k – 90k for used and for new vehicles. They are hoping to raise $50,000 to help with the expenses of purchasing a van. All extra funds will be used towards other medical equipment, medical travel, food during hospital stays and anything else that is related to Ali’s medical care.

With the purchase of a wheelchair van, Ali will be able to enjoy trips to the zoo, worlds of fun, and the community garden to help garden and make it easier to get to and from doctor appointments or the hospital when needed. This will let Ali and her family enjoy vacations together. They will be able to travel to Texas to see Ali’s sister, two nephews (one of whom she has not been able to meet), and her grandparents. They could also travel to family Christmas which they have been unable to attend for the last several years due to Ali’s discomfort in traveling and the distance.

Please donate to Help Hope Live in Ali’s honor today, and ask your friends and family to give, too! We would love to plan some fundraisers in Ali’s honor, too, so if you can help with that, please contact her grandma at [email protected] or her mom at [email protected]. Thank you for your generous support!