Help Morgan Fight the Bear

My beautiful granddaughter, Morgan, who is 18 years old now, was diagnosed last year with a very rare disease, Niemann-Pick Disease Type C

It started with tripping a lot, then her hands started turning inwards, her speech was being affected and when, after many months and multiple doctor visits and testing, it was finally diagnosed. She was diagnosed with Niemann-Pick Disease Type C which is a ultra rare lysosomal disorder. None of us had ever heard of it before, but after much research we found out that it is a rare, slowly progressing, and always fatal disease. It affects every part of her body, causing difficulty walking, talking, eating, drinking and cognitive abilities.

As of now NPC is an untreatable disease and given the rarity of the disease there are only a few options for treatment. Morgan is currently on a specialty medication called Miglustat in which she takes 6 times a day which is supposed to slow down the progression of the disease. Each pill we estimate cost $106 per pill. Fortunately, both of her parents’ insurances pick up a lot of that for now. Morgan’s doctor also recommended that she reach out to a team of doctor’s and scientist who are relentlessly looking to find a cure for this disease. As of now she flies out to the National Institution of Health in Bethesda, Maryland and is part of an Extended Access Program in Chicago.

In addition to this her family is currently making preparations to what financial hardships that they will possibly face in the near future. Currently Morgan can walk but it is getting increasingly difficult. Her fine motor skills inhibited and make it difficult for her to open things. Her lunches have been reduced to soft foods because of her choking issues and she has to let her friends help her open her packages of food at lunch time at school. All of which she takes in stride and a cheerful heart. These are just a few of the symptoms that Morgan has to deal with. Morgan is currently receiving many types of therapies to maintain and to build up strength. Wheelchairs, adaptive equipment, therapies, medication and making memories for Morgan are just some of the expenses things that we anticipate that she will be needing in the near future.

Morgan is a very determined young girl, doesn’t want to be treated as different. She has refused to use a wheelchair, although she will now use one if she needs to walk far distances. Recently, “Make-A-Wish” sent her whole family to Disney World where she had so much fun (and used the wheelchair). Thank You so much to Make-A-Wish!

Why the “Fight the Bear”?

Why the “Fight the Bear”?

About a year before Morgan was diagnosed, she was struggling with so many issues and felt really discouraged. Then she started having dreams about wanting to fight and beat a bear. The family thought it was funny to hear about her dreams of fighting a bear, but then next year, she had to write a monologue in her theater class and wrote it about fighting and beating the bear. She wrote:

“In a world where this one little girl wants to tackle a bear, a specific black bear. She is big and bold, but the bear doesn’t have a single clue who he is taking on, because she is not going to do it without any hesitation, as a symbol of independence and self-worth.” —by Morgan Hill

Later, she told us that the black bear represented her disease. And that has been her attitude through this whole time. So everybody calls her cause “Beat the Bear”.

Morgan has so much personality, and is very funny, she loves her family and is so sweet to everybody. Morgan has 3 older siblings, and she has a mother and a father who work hard to provide and care for her as much as they can.

We all are aware the bear may win, but, Beating the bear off and keeping our Morgan safe and comfortable is now our goal, she will soon need her own wheelchair and other assistive devices to give her last years the quality and happiness she deserves.

If you can help Morgan and her family, they most certainly could use it, and every penny will be treasured by them.

Thank you for listening to my story about my beautiful granddaughter.

May you all have a wonderful life filled with joy and success.

— Grandmother Claudia

The family is building Morgan a website, you can see it here - https://MightyMorganHill.com