However, last year around Halloween the symptoms started to happen more frequently. Numbness and pain in random parts of her body. She, like many, would ignored them as Heather had been dealing with them for years. Then in December my wife’s body started to completely fall apart. The numbness spread to her entire right side of her body. The pain grew more severe and wouldn't let her sleep. Her distant vision was a blur, but I believe what frightened my little boys and me the most was when her legs wouldn't work and her speech became slurred and hard to understand. Heather has been the love of my life since grade school and for the first time I saw real fear in her eyes. She was slowly being trapped inside her own body and we had no idea why.
After multiple tests, an ER visit, and hospital stay, Heather was finally diagnosed with MS. They found that she has multiple lesions (this is where the nerve damage can be seen on a MRI) throughout her brain and it has even progressed to her spine. MS is a progressive disease where your immune system attacks your central nervous system causing a multitude of debilitating symptoms. A progressive disease is one that keeps getting worse and currently no medication can stop it, only slow the progression.
Heather has deep pain in random parts of her body one day and total numbness in up to half her body the next. She never knows when her legs will give out from under her. She has had blurred vision, dizziness, slurred speech, memory loss, trouble being able to communicate her thoughts and sleep is very hard for her. During the night, the nerves seem extra active with pain and throbbing that keep her awake. The irony being that another major symptom of MS is extreme exhaustion regardless of rest. So the MS makes her severely tired but then won't let her sleep.
This is all happening to the best person I have ever known. Her compassion, strength, and fearlessness has always been inspiring. She is one of the truly good and selfless people the rest of us strive to be. When I'm losing faith in the world, she is what I think of to give me hope.
For most of her adult life Heather has been saving children, most notably as a children's social worker for 12 years. Everyday, Heather fought so hard to save children from some of the most despicable people doing horrific things that most of us won’t even acknowledge exist while helping other families stay together. Witnessing child abuse, child rape, and even child murder on a constant basis was awful for her. There were countless sleepless tear-filled nights but she never closed off her emotions to protect herself from the horrors she was constantly witnessing, choosing instead to take the scars, care more deeply and be a better fighter for these children.
I am in awe of Heather's strength. I don't know of anyone who could keep fighting that long and that hard while carrying so much pain, but that is who she is. Heather is a fighter who's purpose is making life better for everyone she touches.
Now Heather is fighting this terrible disease and of course is handling it better than anyone I know. She doesn’t wallow in pity. I haven’t heard her say one time, it’s not fair. Instead she exercises, eats right, takes the medication to slow the disease, and follows doctor’s orders. But the heartbreaking truth is MS is a progressive disease and all the medications available only slow its progress. Heather's MS medication and even steriod treatments do little for her daily pain and other symptoms.
Heather’s most recent flare up lasted over a month. At its high point, Heather started having suicidal thoughts that lasted for about a week. It wasn’t that she was overly depressed, she stated it was as if someone was playing a recording she could not turn off. Once the MS flare up calmed down, the recording stopped. It wasn’t till after the flare up that Heather shared this with me. Even more devastating, she admitted these terrible thoughts had come with previous flare ups and had lasted much longer.
I don't accept this new reality for her. I have been searching for and studying the different treatments for this disease since her diagnosis. There are no drugs that cure MS. I finally found more than hope. HSCT stem cell transplantation will halt this awful disease in its tracks and possibly take away some if not all of her symptoms.
After this treatment, the flare ups that cause the suicidal thoughts will stop. The possibility of a future in a wheel chair, erased. All MS progression and the devastation that comes with it, stopped.
This treatment extracts Heathers own stem cells, then treats her with chemo therapy to kill her current defective immune system, and then transplants the now treated stem cells back into her, which then regrows an entirely new healthy immune system. This treatment has been working for decades and stops MS in over 80 percent of patients. Another 40 to 50 percent see a reversal in many if not all symptoms. There have even been recoveries as dramatic as those who were wheel chair bound now becoming long distance runners.
To add to this good news many of the patients included in these percentages are much older, with much more advance cases than Heathers current status, so her chances are even greater than the numbers suggest.
The problem is that even though this treatment is FDA approved and used on some forms of cancer, it is not approved for MS. This gives the insurance company the excuse to not cover it. The treatment is done in Germany, England, Italy, Canada, Russia, Singapore, Mexico and many others.
The US has a few clinical trials for example in Chicago, but it is impossible to get in and the cost for the treatment alone is 125,000. This doesn’t even cover before and after medical costs which are also very expensive and not covered by insurance. Everyday Heather isn't treated, the disease causes more likely permanent damage.
Heathers best option is the award winning, state of the are facility Clinica Ruiz in Mexico. The director of the hospital is Dr. Guillermo Ruiz. He did his medical training at the mayo clinic, considered the number one hospital in the world. The clinic is considered by most to be the best in HSCT treatment. They have been performing this procedure since 1996 and have a 0 mortality rate and a success rate over 84 percent. They have even been pioneering new ways to handle the extracted stem cells to ensure the new immune system grows quickly. People from all over the world are going to this clinic.
I have spoken to many patients who have had this procedure done in the clinic. All had the MS stopped. There were different levels of recovery of the symptoms most of which had decreased or even disappeared but again the MS was stopped. Every patient stated in their own words the chemo is rough but this treatment gave them their lives back, gave them hope for their future.
After hours on the phone with my insurance company, they are still refusing to pay for anything that is part of this treatment in Mexico or the US. The money I am asking for will include:
pretreatment-Hemotology, MRIs, Doctor and Dentist test to insure she has no infections before she goes, because they will be removing her immune system.
Flight round trip first class to minimize exposure to viruses and other infections
a required care giver that helps her through the month-long process
Flight round trip and room/board for the caregiver
Travel medical insurance
HSCT treatment itself
after care including physiotherapy and chemo recovery injections. major recovery including some quarantining due to a new still growing immune system takes about 3 months. Full recovery to see all benefits takes a year.
The waiting period is a year to a year and a half depending on cancelations. Some can’t raise funds while others have infections and must reschedule.
The balance of the money will go to a series of stem cell treatments done here that will give her some relief from these symptoms and have been shown to slow MS progress.
This is necessary to limit the permanent damage done while waiting for treatment.
This procedure pulls stem cells from Heathers own body, treats them, and reinjects them. There is no chemo and the extraction and reinjection are much less complicated. It does not stop the disease like HSCT but it will reduce pain, numbness, increase leg strength and reduce her exhaustion. Some have even said symptoms have completely been erased for long periods of time.
I am sorry to everyone that I have to ask for this. I wish it was covered by insurance. I wish I had the money to take care of her myself. My wife's health and life are far more important than my embarrassment. The amount I need is insane, but when you know her and see what she is going through on a daily basis you understand. If you ask Heather, she will telll you she is doing good or that she is fine...I can esure you she's anything but fine!
Any money we don't use will be donated to MS research to make this procedure the standard for MS treatment in the United States.
Please donate what you can and just as importantly spread the word. Those that know her know how special and important she is. The world is a better place when Heather can be part of it.
To the families she held together and the children she pulled directly from hell, Heather is a hero. Now is the time to save her.
Please help me save my wife.
- Kathleen Nichols
- MaryClare Riser
- Shams Nabavi
- Jill Schappel
- Martin Alpert
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