Hope for the Beets

In the summer of 2022, Stella (4 years old) and Max (22 months) were diagnosed with an extremely rare genetic disease called Morquio Syndrome. Morquio Syndrome, or Mucopolysaccharidosis Type IV (MPS IV), is a progressive disease that affects 1 in every 200,000 - 300,000 births. Children with this condition are missing, or don’t produce enough of, the enzymes required to break down sugar chains naturally produced in the body. This leads to debilitating abnormalities of the bones, spine, and internal organs. As this disease progresses, physical ability and immune function deteriorates causing multiple issues over the span of the child’s life. Up to 70% of patients are in a wheelchair by their teen years and lifespan is between 30 to 40 years. There is no cure for MPS IV. Although there are treatments to slow the progression of Morquio Syndrome, the rarity of this disease makes it difficult to determine the long-term, positive effects of such treatments.

After learning both children were diagnosed with MPS IV, parents Brittny and Aubrey Beet, started doing research, collecting information, and reaching out to doctors who specialize in genetic metabolic disorders. MPS IV is very rare and data is limited which led to them seeking medical advice internationally. Early into their journey, the Beet’s connected with Dr. Tomatsu, MD, PhD and Head of the Skeletal Dysplasia Lab at Nemours Children’s Hospital in Delaware. Dr. Tomatsu accepted both Stella and Max into his Morquio research study and in February of 2023 the Beet family traveled to Delaware for consultations and extensive testing. After months of extensive research, innumerable doctor visits and in depth conversations with specialists, Brittny and Aubrey determined the best course of action for their children: stem cell therapy through bone marrow transplant.

In March of 2023 the Beet’s presented their proposal to the bone marrow transplant team at Alberta Children’s Hospital (ACH). Two months later, Stella and Max were both approved for stem cell therapy upon accurate donor matching. They will be the first MPS IV patients in Canada to receive this treatment for Morquio Syndrome. In September of 2023, donor matches were found for both kids. Stella is slated to begin her medical journey on April 19 of this year and Max’s treatment will begin after Stella’s is complete. The treatment for both children will consist of a minimum 6 week hospital stay, followed by a year of healing and rebuilding of their immune systems. They will each undergo chemotherapy to ensure their bodies do not reject the transplant and then an infusion of stem cells to complete the treatment. Once treatment is underway, Brittny and Aubrey will be sharing the responsibility of caring for one child in the hospital and one child at home over the course of six months; followed by strict homecare and multiple daily hospital visits to follow.

This journey has been tough for the family and will become financially more challenging in the near future. The Beets are a single income household with Aubrey working shift work and Brittny unable to return to work due to the children’s diagnosis. It is imperative that Aubrey be home with his family while going through these procedures and limit exposure to possible infections. All money raised would help with living expenses and go toward the following:

This diagnosis and the harsh reality of limited therapy options has been devastating for the Beet family. It has been a time consuming struggle to get the information and healthcare Max and Stella need. Having two children with a disease that is progressive and time sensitive while dealing with a healthcare system that is slow has been heartbreaking. It has taken 19 months from diagnosis to finally getting the help these amazing kids deserve. If you have the ability to give, please do so.

If you’d like to learn more about MPS IV please follow the links:

Research Article

MPS Society of Canada