Liam Hugo Ryan was a delightful, energetic four-year-old until suddenly he could no longer climb stairs or hold his head up. Even his voice faded. His parents took him to one physician after another trying to explain his rapid deterioration. After two months of this frantic search, Liz Dang Ryan and Luke Ryan learned in March (2018) that he has Juvenile Dermatomyositis (JDM).
Liz remembers the March day of what yet another appointment, this time at the Tufts Floating Children's Hospital. But this time they got a diagnosis, and Liam was immediately thrust into intensive treatment. Within a week he went from lying prone, unable to lift his head, to riding a tricycle around the unit. There was hope.
JDM, also referred to as Juvenile Myositis (JM), is an autoimmune disease in which the body's immune system attacks healthy cells. It affects 1 in 500,000 children in the U.S. with severe muscle weakness and a skin rash. JDM has no cure, and given its rarity, has attracted little funding to find one. Treatment methods include corticosteroids, immunosuppressants, and chemotherapy. Children with mild cases may enter remission, but more serious cases can lead to total loss of mobility, severe pain, and death.
Liam has a relatively mild case, and doctors are hoping that 3 to 5 years of treatment will lead to remission. He is now able to swim, but must avoid any sun, not easy for a child.
The Ryans are committed to raising funds to improve treatments and find a cure. Join Liz and Luke, Liam and Olivia on Aug. 11 for the Second Annual Bowl 2 Cure JM event at King's Bowl in Burlington, MA, 10 a.m. to 1 p.m. In addition to bowling, there will be video games, face-painting, pizza, and soft drinks. All proceeds benefit the Cure JM Foundation. For more information for the event on Eventbrite, and you can follow Liam's journey on Facebook.
Bowl 2 Cure JM 2019: USD 30.0
Category: Community | Fundraisers