Joelle’s Journey
Donation protected
Hi everyone! This is Jaemee and Sean Huot, Aunt and Uncle to our sweet Joelle, and brother and sister-in-law to Matt and Alexis Huot.
Joelle was born on March 13th, 2021. Just three weeks later, she was diagnosed with very serious and rare genetic disease called Hurler Syndrome. Children with Hurler Syndrome are born missing an enzyme that helps break down long chains of sugars in the body. The disease is only diagnosed in 1 of 100,000 children. It causes skeletal abnormalities, cognitive impairment, heart disease, respiratory problems, and reduced life expectancy.
Unfortunately, Joelle has the most severe form of the disease, and there is no cure. Without treatment, the average life expectancy of children diagnosed with this disease is less than 10 years old. Joelle will have to go through many different treatments, including: enzyme replacement therapy, chemotherapy, and ultimately a bone marrow transplant.
Matt, Alexis, and Joelle are going to be having doctors appointments in both Oakland and UCSF Hospital several times a week for the foreseeable future. Ultimately, following chemo and enzyme treatment, Matt, Alexis, and Joelle will have to live at UCSF for 3-6 months during Joelle’s bone marrow transplant.
Matt and Alexis are both fortunate enough to have great jobs with good medical coverage to help with a portion of this financial burden. However, with the multiple doctors appointments, constant traveling, and 3-6 months of living at UCSF, they will have quite a few extra monthly expenses. At this time, it is unknown how much of the medical expenses will be covered by insurance.
The cost of medical expenses, meals, lodging, transportation, and lost wages due to neither being able to work full time, are going to add up quickly.
We know so many people will reach out asking what they can do to help, and this was the best way we could imagine people could help if they wanted to. All monies will be donated to helping Matt and Alexis with all involved medical and travel expenses.
We know these are trying times for everyone, so if you can donate we appreciate every penny. We’d also appreciate if you could share Joelle’s story.
We will try and keep everyone updated on here and other social media platform.
Thank you everyone,
Sean and Jaemee Huot
Joelle was born on March 13th, 2021. Just three weeks later, she was diagnosed with very serious and rare genetic disease called Hurler Syndrome. Children with Hurler Syndrome are born missing an enzyme that helps break down long chains of sugars in the body. The disease is only diagnosed in 1 of 100,000 children. It causes skeletal abnormalities, cognitive impairment, heart disease, respiratory problems, and reduced life expectancy.
Unfortunately, Joelle has the most severe form of the disease, and there is no cure. Without treatment, the average life expectancy of children diagnosed with this disease is less than 10 years old. Joelle will have to go through many different treatments, including: enzyme replacement therapy, chemotherapy, and ultimately a bone marrow transplant.
Matt, Alexis, and Joelle are going to be having doctors appointments in both Oakland and UCSF Hospital several times a week for the foreseeable future. Ultimately, following chemo and enzyme treatment, Matt, Alexis, and Joelle will have to live at UCSF for 3-6 months during Joelle’s bone marrow transplant.
Matt and Alexis are both fortunate enough to have great jobs with good medical coverage to help with a portion of this financial burden. However, with the multiple doctors appointments, constant traveling, and 3-6 months of living at UCSF, they will have quite a few extra monthly expenses. At this time, it is unknown how much of the medical expenses will be covered by insurance.
The cost of medical expenses, meals, lodging, transportation, and lost wages due to neither being able to work full time, are going to add up quickly.
We know so many people will reach out asking what they can do to help, and this was the best way we could imagine people could help if they wanted to. All monies will be donated to helping Matt and Alexis with all involved medical and travel expenses.
We know these are trying times for everyone, so if you can donate we appreciate every penny. We’d also appreciate if you could share Joelle’s story.
We will try and keep everyone updated on here and other social media platform.
Thank you everyone,
Sean and Jaemee Huot
Organizer
Jaemee Huot
Organizer
Rohnert Park, CA