Rare disease called “Neurofibromatosis”

Neurofibromatosis.

A genetic disorder that causes tumours to form on nerve tissues. These tumours can develop anywhere in your nervous system, including your brain, spinal cord and nerves. NF1 is the most common neurological disorder caused by a single gene; occurring in one in every 3,000 children born. NF2 is a rarer type, occurring in 1:25,000 people worldwide. While today there is no consensus, studies indicate that schwannomatosis occurs in 1:40,000 people.

My brother, Harrison Grey M. Mechure, 31 years old, is suffering from this rare disease (but unsure if it is NF1 or NF2) since he was born. It started with birthmark-like (balat) pigment on his skin and eventually progressed to lump-like tumours (neurofibroma). After he graduated college, the mass on his left thigh kept on growing and that caused him to experience difficulty in walking, and completing simple tasks in his everyday life. Over time, he slowly started to lose body control and balance.

Currently, the basics such as eating, drinking from a cup, taking showers, changing clothes, and using the bathroom are some of the activities he is not able to do. He can’t eat alone as he easily loses grip of everything he holds. He cannot manage to walk let alone stand on his own. He needs help with everything.

My sister needs to help him do most of the stuff so he can survive in a day. She helps him to eat and drink, shower, put on his diaper and clothes. Transfer him from his hospital bed to his wheelchair, brush his teeth and help him lay down on his bed.

Upon his last check up, His doctor advised that he should undergo a biopsy (to identify specifically if his condition is NF1 or NF2) and operation to remove the partial part of his tumour as soon as possible, however, due to our current financial situation, we are not able to finance the cost of this operation.

So with this in mind, I would like to take this opportunity to knock on your kind and gracious hearts and ask you to donate any amount you could. The money will help my brother to proceed with the operation and help cover some of the post-operational treatments that he may need. This will help him look forward to his life and his future.

As a forward expression of gratitude, our family would like to thank those people who are and who will be with us through this journey. May your hearts be filled with with joy and we are hoping for continuous blessings to your family.

We are accepting cash donarions. Please help us by sharing this post. Thank you and God bless!

GCASH: Harlian "Gail" Mechure 09676427677

METROBANK: Renato Carmona Jr 485-3-48533522-7

BDO: Ann Grizelda Mechure 005100425726

International bank account: ILA Bank Bahrain Ann Grizelda Mechure BH76 ABCO 1749 8389 1010 01