Help Jeanette Halt M.S.

Eric Guzman is organizing this fundraiser.

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Hello all! My name is Eric. I’m the proud and loving supporter of my wife Jeanette. She is 27 years old and is currently fighting her 10th year with Multiple Sclerosis.

For those that aren’t too familiar with this, Multiple Sclerosis (MS) is an auto-immune disease that can often lead to disabling conditions due to progressive damage done to the sheaths (covering) of nerve cells in the spinal cord and brain. When this happens, messages from the brain cannot travel properly to parts of the body. At the moment, it’s unknown what triggers MS, and that there is no cure.

Jeanette’s MS History

It was in 2008 that Jeanette began to experience her first symptoms of MS. Double vision developed, which lasted for 3 months before being diagnosed Multiple Sclerosis. She began her first treatment, ‘Rebif’ at 18 years old. This required 3 injections per week, often giving symptoms of the flu, and muscle aches.

Jeanette and I met and married in 2010. Our son was born in 2011 where shortly after, multiple relapses began to occur. She experienced extreme fatigue, weakness, spasticity in her legs, episodes of confusion, vision problems, tingling and numbness, slurred speech, bladder problems, depression and anxiety. This was especially hard to see her go through with a newborn. She’s also gone through many rounds of steroid treatment due to spasticity throughout her body, and numbness of the lower part of her face. Many wouldn't realize her pain by looking at her, and sometimes even I forget the everyday hardships that she endures.

In 2013, Jeanette began her second treatment using ‘Tecfidera’ due to the progression of MS. While it proved to provide stability for awhile, she began to frequently experience small seizures, until experiencing a terrifying grand mal seizure in 2015. This led to more medication that is still being taken today. Thankfully she has been seizure free with treatment. By 2016 MRIs have shown disease progression, and again just recently in 2018, MRI results show more progression of the disease along her spinal cord and brain. These progressions have left permanent scarring on her nervous system. Sadly, we are now looking at our options for a 3rd drug treatment plan.

A Bit About Jeanette

My wife has been as positive as she can be with this disease. She is the most selfless person I know, and unconditionally caring of others. She always keeps a smile on her face and makes the corniest jokes. Jeanette’s love and focus on being a mother has been amazing. She also has hobbies and dreams. Both of which I pray daily that I can help her achieve. She’s also recently received her driver’s license! A huge accomplishment in the steps of building her confidence and faith of a ‘normal’ lifestyle. She also wishes to get into a career one day. Alek and I are very fortunate to have her in our lives. It has been heartbreaking for me to watch her deal with her symptoms, and she is too shy to openly discuss her disease with others.

Pushed To Our Limits

Jeanette was once told by her diagnosing neurologist that “Your life is on a timeline now”. Thankfully with the advancement of medicine and technology since 2008, there are now different choices of treatments to choose from. However, these Disease Modifying Drugs (DMDs) only aim to slow progression, ultimately allowing MS to run its crippling course.

We spent a lot of time together getting to know doctor visits during our early years of marriage. I've helped Jeanette through many nights of side effects from various treatments, and together have lost sleep reading up on the next up and coming new drug, constantly filling ourselves with hope time and time again.

My wife has been extremely fortunate to be able to walk on her own, but needs assistance if she overexerts herself. She is still at a state of mobility where she can care for herself, doing things like fixing her hair, bathing, dancing to Latin music, and holding her family during movie night. The small things many of us take for granted, we are reminded daily of what to be thankful for. This is one thing that this disease has opened my eyes to.

Another option

While there is no cure, many patients who also have this disease have chosen to undergo a treatment called Hematopoietic Stem Cell Transplantation (HSCT). This treatment has been FDA approved for other conditions, however, it has not been approved as an MS treatment, regardless of the overwhelmingly positive results it's produced. This is a huge roadblock for us and others since it is not normally covered by insurance. This leaves patients to desperately apply for clinical trials or come out of pocket for HSCT treatment abroad.

The aim of HSCT is to “halt” the progression of MS. And while current disabilities are not normally reversed, the idea is to keep the patient from getting any worse. Putting the disease into permanent remission is the goal but no guarantee, and it does not work for everybody, but data has shown great promise in successfully stopping disease progression for many patients.

What does HSCT do?

In short, HSCT uses the patient’s own stem cells taken from their bone marrow to be later transplanted back into their system with the plan to ‘reboot’ the immune system. Before reintroducing the stem cells, the patient undergoes chemotherapy to wipe out their current immune system, which includes the autoimmune T and B cells responsible for damaging the nervous system.

There are different locations that offer this treatment. Jeanette has recently applied for HSCT treatment at Clinica Ruiz in Puebla, Mexico, and thankfully has been given an evaluation for treatment date beginning October 15, 2018! Here, she will stay for a 28 day period, preparing and undergoing the transplantation. I will be her assigned caretaker during the entire stay.

The results following HSCT have shown great promise for many patients, but we understand there are many risks that come with treatment. Jeanette will be under the care of Dr. Guillermo Ruiz-Arguelles, Hematologist.
Dr. Ruiz has many credentials, and was once named among Mayo Clinic's top 50 doctors. He now operates his own clinic in Puebla, replicating the practices of Mayo Clinic, and has performed HSCT on over 550 patients.

What's next?

Leading up to the treatment date, we expect to be very busy ensuring things are prepared for our departure, and arrival after the treatment. Our son will have to stay behind with family for the month, unfortunately. He has been as understanding as we can expect a 6 year old to be!
Jeanette will spend the 90 days before scheduled treatment without her current medication to cleanse it out. This can be a scary time because this leaves her susceptible to flare ups and overactive symptoms.
We will also be spending much of our time fundraising and spreading awareness for our plan. Clinica Ruiz has requested full payment 2 months prior to appointment date. This payment includes treatment and lodging.

The current price for Clinica Ruiz’ treatment is $54,500 USD. This is no small fee for us, or for many I’m sure. We are reaching out to family, friends, and even strangers for help. It is an extremely humbling moment for us to come forward asking for assistance, but I feel that I’ve exhausted my resources, and realize I cannot do everything by myself. I can’t bare to watch her condition decline any longer. I sincerely hope that this treatment can stop the progression of her disease. Maybe one day she may even attend a boxing class with me!

With that said, I just want to say thank you for your time in reading this and understanding our story. We hope you can help, and even if you’re unable to financially, your support and awareness will keep us driving forward. Please share our story with others! Reach out to us with any ideas you may have. We are beyond grateful for your time, generosity, love, and support!

Sincerely,

Eric