Patient passes away due to HSCT complications at Northwestern

[ActiveMSers]

Carol, 35, was diagnosed with MS last year. Recently married, she was a wife, mother, sister, daughter, public school teacher and school counselor. She was transplanted at Northwestern and did not survive. This is heartbreaking. And a reminder that HSCT is a gravely serious commitment. The surviving members of her family are trying to raise funds for the funeral and resulting debt for those who would like to help. The link is below. My deepest condolences go out to them. - D

Carol was a fighter and her relentless determination was inspiring and contagious. Her reluctance to give up is what led her to follow and pursue the aggressive HSCT Transplant treatment.

On the morning of November 12, 2017, God gained an angel. Due to complications immediately following her transplant, she is no longer with us. We are all still in disbelief as to how this could happen. Her spirit lives on through her daughter, Melanie and her husband Gib. This campaign has turned a new page since all medical and travel costs incurred were payed for out of pocket, thereby, leaving her husband and daughter with significant debt and funeral costs.

Carol was determined to beat MS, by any means and via any sacrifice. Mel and I take some comfort in knowing she is now relieved of all the pain and stress she endured. Carol always use to say that there was a reason for everything. Melanie and I find it hard to understand what that could be. She will be missed so dearly by so many.

We love you Carol. We will miss you always and forever until the end of our days.

Melanie & Gib

https://www.gofundme.com/CarolRuiz

[ActiveMSers]

Another MSer, a grandmother with primary progressive MS, passed away last week after complications from a chest infection after her transplant in London. This is from Angela's gofundme page (no longer active). So sad. - D

Hi my name is Angela Hill and I have Multiple Sclerosis, a debilitating condition which affects around 100,000 people in the UK. I was diagnosed with Primary Progressive MS, back in 2000 at the age of 42, and currently there is no known cure.

The shock of the diagnosis was devastating, and the reality of the condition has been life changing. Over the past 16 years I have developed mobility problems caused by Spasticity and Numbness in my limbs. I was a very active person in my youth and I now have to rely on the use of a walker and mobility scooter to get around. I have recently developed ‘Drop Foot’ which causes me to trip and fall, so I wear a leg brace which is uncomfortable, cumbersome and in itself causes mobility problems. This illness not only affects my mobility, it can attack any part of my body at any time and with no warning. I have to make regular visits to the Hospital for Botox injections to control the spasticity in my legs and also in my bladder.

Prior to me getting MS I walked everywhere, now I can't even walk to my local shop which is less than 200yds away. I live in an adapted bungalow as I cannot manage stairs anymore. Getting around the house is proving more and more difficult as the years go by. Some days, my energy levels are so low that I barely have the strength to get out of bed. I am a Grandmother and playing with my 4 year old grandson is something I long to do, but he really doesn’t understand that this is a tiredness that drains you to your very core so I have to rest to recover.

However, I am very hopeful that with a new treatment called Hematopietic Stem Cell Treatment (HSCT) there could be a light at the end of the tunnel for me and other MS sufferers. With this new treatment Stem Cells are removed before my immune system is destroyed by Chemotherapy, along with my body’s knowledge of having MS. Then using my Stem Cells, they are reintroduced back into my body and this will help reboot my immune system without MS which would stop progression and in some cases repaired disability.

I have visited various Consultants and Neurologists for tests only to be told that I do not qualify for this treatment as it isn't available in this country for my type of MS; it is available in Mexico, Russia and India where they have had amazing results, but as always it comes at a price. My fundraising target is to cover the cost of the treatment, flights and a carer.

I do understand that there are people in a worse predicament than me, but your donation would give me the chance to halt further progression of this condition and help me to lead a relatively normal life for the rest of my life.

I would like to express my deep gratitude to anyone who would be kind enough to make a donation, be it great or small, helping me to reach my goal.

Thank you


Please note: Any remaining funds will be given to another HSCT fundraiser.

[Suebee]

Rip

Dave, thank you for highlighting these MS warriors and the risk they took to try to halt this awful disease. RIP

Fight for a Cure, Cure MS.