Francesca’s Fight Against MPS

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Hello, my name is Isabella Martin (Hutson) and I am the grateful mother of the most amazing, vivacious little girl, Francesca (Frankie) Antoinette Martin. Talor and I welcomed Frankie into the world on July 24, 2022, and she has unfortunately had numerous health issues pop up throughout her first year of life.

This September at 14 months old, we received the most recent, earth-shattering diagnosis of Mucopolysaccharidosis Type I (MPS IH), or Hurler Syndrome. MPS IH is is an extremely rare, progressive genetic disease in which the body is missing an enzyme needed to break down long chains of sugar molecules. These chains of molecules are called glycosaminoglycans (formerly mucopolysaccharides). As a result, the molecules build up in different parts of the body and cause various health problems impacting organs such as the heart, spleen, liver, muscles, connective tissues, joints, and the central nervous system causing severe functional impairment. Without treatment, life expectancy for an individual with Hurler syndrome is less than 10 years.

There is no cure for MPS IH, but treatments such as bone marrow transplantation (BMT) and/or enzyme replacement therapy (ERT) can help make MPS I a more manageable disease. There are also clinical trials opening for emerging gene therapy treatments in lieu of BMT, which show very promising results!

Frankie began receiving weekly ERT on October 23rd and we are now working with the world renowned MPS team at University of Minnesota’s M Health Fairview Masonic Children’s Hospital. In the coming months, we are aiming to join a gene therapy trial which will have 1:1 randomization (as required by the FDA) of gene therapy and allogeneic bone marrow transplant with hopes of receiving the gene therapy. Either way, she will be facing chemotherapy followed by stem cell transplant.

This will require me to take a leave of absence for an indefinite amount of time to support Francesca’s treatment with my mother, while Talor continues to live and work in Madison, WI. If all goes well, we will be there for approximately 4 months.

Despite her challenges, Francesca continues to be joyful and curious. She never fails to make her family and friends smile. She consistently amazes us with her resilience and positivity, no matter the circumstances.

As you can imagine, there are many associated costs with a life-saving treatment, so we want to personally thank everyone ahead of time for any contributions. Anything is appreciated. If you cannot donate, please share to spread the word.

Alternatively, if you would like to donate directly to the cause, please make a donation to the MPS Society at https://mpssociety.org/donate-now/

Much Love and Thanks,

The Martins