Stem Cell Transplant (aHSCT) for Mikaela

****PLEASE READ LATEST UPDATE****

As most of you know, I was diagnosed with Multiple Sclerosis in January of 2020. My disease progression has been more aggressive and persistent than we ever expected. I have failed three different treatment plans. Despite this, I spent the beginning of this year feeling physically and mentally better than I had since before my diagnosis. Unfortunately there were other things going on under the surface. 

In July, I tested positive for the JC VIRUS (John Cunningham Virus). Not only positive, but out of research standards positive. I was referred to the Cleveland Clinic Neuro Immunology department for further testing. Because of the fatal brain disease that being JCV+ causes (Progressive Multifocal Leukoencephalopathy) and because there is no cure, my only option is to undergo aHSCT (Autologous haematopoietic stem cell transplantation).

This treatment is risky, but less risky than needing an outside donor, as I am able to use my own stem cells. If we can rebuild my immune system health, we can put this disease into remission for years.

PML can be fatal anywhere from 2 months to 2 years of diagnosis. It also causes debilitating disability until eventual death. There are now survivors who have been in remission for ten years, but they are few. In my case, this disease activates in the immune system due to the specific medication I was initially taking for MS as a rare side effect. If this treatment works, it will add years to my life that I would not otherwise have and keep the disease inactive/in remission for hopefully several years. 

The other giant concern is further MS progression and disability as I can no longer take MS therapies while my immune system is this low, and while I have this high of a disease load. Thankfully, Cleveland Clinic is utilizing aHSCT as part of an MS clinical trial as well. If I am approved for this arm of the study, research will be covering nearly all costs of the clinical trial/treatment. If I do not, then I must pay for it out of pocket, as medicare does not currently cover any care related to this treatment.

What does this mean?

I will be hospitalized at Cleveland Clinic for approximately 4-6 weeks, followed by at home isolation for 3-4 months, followed by 6+ more months of recovery period. Before hospitalization, I must be within 1 hour or Cleveland clinic to initiate my care for the first few weeks (hyper-growth of stem cells).

What are we looking for?

If I don't get into the clinical trial arm, I will need to fund this myself. We will also be looking at organizations to help aid in this. But the cost on average is $150k for treatment.

If I do get into the trial, these donations would ease our financial concerns, while I live as a single parent on one income.

Financial assistance for travel and lodge to and from Cleveland.

Financial assistance for childcare, food, and necessities for the kids (one with a dairy protein allergy).

Assistance to pay for a medical helper for ADL's once I'm in recovery.

Palliative care / funds for my family should anything go wrong, which is of course the biggest risk.

We also hope to see friends who have time and capacity to step back into our kids lives, as this will be a very stressful time for them. Take them to movies or parks. Bring them happy meals. Whatever you can manage, we will be beyond grateful for.

My partner is planning to care for me while I am in Cleveland and during my isolation/recovery period. We hope to get a Medicaid grant that will offer financial compensation for caretaking upon my initial arrival at home.

This is why we are hoping to raise $25,000 to start. Should I need to fund the treatment all together, that number will look extremely different, at around 175k.

We know this is a huge ask. And if anything happens to me, I imagine that ask could be extended or altered. We do have a small employer based life insurance plan, but I do not have any kind of retirement or savings after becoming disabled in 2020 due to my Multiple Sclerosis diagnosis.

We thank you so much for sharing, for helping, and for donating whatever you can.

I begin working with research at CC next week, and will know more with each appointment about when and how this process will begin. I will know by the end of December, which arm of the clinical trial I will be approved for, and therefore what my out of pocket would look like if not approved for the stem cell trial.

We will post updates as often as we receive them.

THANK YOU!!

For more information regarding aHSCT in regards to immune diseases :

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7936693/