Rakeb Hirpesa

Family and friends of Rakeb Hirpesa are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with a catastrophic illness. Rakeb has chosen to fundraise with Help Hope Live in part because donations are tax deductible for contributors and will only be used to cover medical and related expenses.

Rakeb is my 5 year old daughter. She has a rare genetic disorder called KCNQ2, which has severely affected her brain and nervous system. When she was born, they said she wouldn’t live past 3 months old, but she continues to defy all predictions placed on her. She laughs, smiles, loves music, cocomelon and time outside, however, her condition is very complex and has caused significant developmental, neurological, respiratory, and feeding difficulties. She requires constant care, medical support, and assistance with every part of her daily life. She is completely dependent on her caregivers to keep her safe and healthy.

Because of her condition, Rakeb experiences significant medical challenges. A few of the things she faces are: severe seizures, significant developmental delays, severe neurological impairment, she is unable to speak or communicate verbally, she has severe muscle weakness which prevents her from walking and requires complete support to sit and hold her head up.

Because of her low tone and neurological deficits, Rakeb receives her nutrition through a tube in her stomach. She also has a difficult time managing her oral secretions, which can be life threatening if immediate action is not taken to clear her airway clear.

Rakeb’s medical needs are very demanding and require a caregiver to be available around the clock. Despite all of the challenges I face in her care, I do everything I can to keep her safe and give her the best quality of life possible. That being said, there are some challenges that are just too difficult to overcome by myself and that is providing her with the safest transportation possible.

Right now, transportation is one of our biggest struggles. I, her mother, drive a 2006 Toyota Matrix compact car, which is not equipped for her needs. She needs to be in a position where medical intervention can be quickly administered if needed, and due to the small size of my car, keeping things readily accessible and having the space to do it is challenging. Every trip to a medical appointment is difficult and uncomfortable for Rakeb and the limited space often causes her pain. She has to be transferred in and out of her medical stroller to her car seat multiple times, which is uncomfortable for her and puts strain on the backs of her caregivers, due to Rakeb’s weight and size and the extremely small area she has to be put in. This increases the chance that an injury to Rakeb or her caregivers may happen. With a wheelchair accessible van, her stroller could simply be rolled up the ramp with her in it and secured with the van’s safety straps, no transfers would be required. I am a single mom with no income, and I simply can’t afford a wheelchair-accessible vehicle on my own. Having the right vehicle would make a world of difference for us. It would allow me to take her to appointments safely and comfortably, and it would improve her quality of life in so many ways. She could be more involved in meaningful community activities if getting her there wasn’t so taxing on her and her caregivers.

This support would change my life and Rakeb’. It will help me continue to be her caregiver while giving her the best, safest care possible. I am deeply grateful for any support you can give. Thank you for reading our story and considering supporting us.