Now their second daughter, Neha, is gravely ill with the same devastating and terminal disease.
Time is limited and we need your help. Your generosity will help ensure that Neha and her parents, along with her healthy brother, have as much quality time together as possible. Your contributions will also help purchase critical medical equipment that Neha needs to live as dignified and as comfortable a life as possible, as the illness continues to take hold of her.
Neha is a sweet, smart, and funny 13-year old girl whose body is deteriorating while her mind remains perfectly intact. Her increasingly limited mobility poses a challenge to her loving parents’ ability to serve as caretakers and the demands of her disease have introduced extreme financial stress into their lives.
Neha is in immediate need of critical and costly medical equipment, the claims for which insurance has unfathomably denied. Specifically, Neha’s care requires specialized equipment for showering and personal care (a specialized toilet seat and a “stander” device will help Neha stand in the shower).
Beyond medical equipment, Neha requires care beyond what her parents can provide. Her condition requires non-stop medical attention to ensure she’s breathing, so her parents alternate between working daytime and night-time hours so that one parent can be constantly by her side. Neha’s father works days as a pharmacist and stays up all night to assist her; Neha’s mother works the night-shift at the US Postal Service, comes home and sleeps for just a few hours, then tends to her daughter throughout the day.
Your support will allow Neha’s parents to purchase medical equipment and bring on part-time professional help that will enable them to focus on enjoying the only gift that matters – precious and limited time with their beloved daughter.
How you can help:
1. Please give generously to help Neha get the medical devices she requires and the quality time with her family she deserves to enhance the dignity of her life.
2. Please forward this GoFundMe campaign to at least 5 people.
MORE ABOUT NEHA (from her Physical Therapist):
Neha is a 13 year-old girl who has a degenerative mitochondrial disease where she is deficient in POLG, a part of her genome. When I started working as Neha’s physical therapist four years ago, we would walk down the block together. I stood close by to make sure she wouldn’t fall, but together we walked. Today Neha is confined to a chair, unable to sit up alone, and her voice barely rises above a whisper as she does not have the strength to project loudly.
Neha’s family is one of strength and kindness. No matter how hard the day, her mom meets me with a smile and thanks me for coming to see her daughter. Her mother does not complain that she barely sleeps, that she’s already lost one daughter, and is watching another slip away. Instead she worries that she has used all her sick time to take care of Neha and now any additional days off go unpaid. Everyone in the home understands that Neha is declining, and her mom just feels saddened over lost time with her daughter.
In an incomprehensible ruling, her parents’ insurance rejected both a stander and a shower/toileting chair for Neha. Her parents worked with a hospital to file all paperwork correctly and yet insurance responded they are not responsible for her toileting or standing needs. Neha now cries when her family puts her in the bath. Her mother goes into the shower with her and holds her head as they quickly try and wash her. It also takes 2 people to toilet her as there is no way to support her body and head without a specialized chair. Neha is fed through a tube that goes straight into her stomach. Almost every other week, she will now go 2-3 days without speaking, constantly grimacing due to extreme gas pains. A stander would help with her digestion.
I have previously asked Neha’s parents if they would allow me to help raise funds. Proud and self-sustaining immigrants, her parents always said no, that they would manage. When they received the notice of rejection for the chair and stander, they agreed for the first time to allow a fundraiser, as time is of the essence.
Neha’s future is uncertain but together, we can help give her family the comfort she so deserves right now.
Thank you so much for your help and support.
- Anne Weisenberg
- Melanie Pearlman
- A Milstein
- Maria Mitousis
Organizer and beneficiary
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