Emily Progin, PR and Communications Coordinator
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FUNDRAISING MILESTONE REACHED FOR THREE-YEAR-OLD WITH RARE ILLNESS
Family Reflects on Power of Community Support One Year After Ethan’s Diagnosis
PINCKNEY, Mich.—One year ago, Kassondra and William Lambert received information that would change their lives forever: their son, Ethan, was diagnosed with the extremely rare illness KIF1A-Associated Neurological Disorder (KAND). This week, they are reflecting on the challenges and triumphs of their past year with Ethan, who turns four years old this March. They are also expressing their immense gratitude to the Pinckney community: they have just surpassed the halfway point to their fundraising goal to secure an accessible van for Ethan.
“That diagnosis was the moment my whole life changed,” Kassondra explained. “It was this experience that rippled throughout every corner of my life.”
Ethan is one of only 400 people in the world with KAND. The diagnosis leads to a range of symptoms that will impact Ethan over the course of his life, including progressive challenges with mobility, balance, strength, and eyesight and a higher risk of seizures. He is nonverbal and currently uses a walker or leg braces to move, and he must attend special education, physical, occupational, and speech therapies on a weekly basis to stay healthy.
In addition to the physical, mental, and emotional burdens associated with the past year of Ethan’s life with KAND, the Lambert family has had to contend with immense out-of-pocket expenses to keep him healthy and mobile. They turned to the national medical fundraising nonprofit Help Hope Live in September 2021 to help offset this burden.
This month, their campaign with Help Hope Live surpassed the halfway mark towards securing a critically needed piece of equipment that their insurance has refused to cover: an accessible van. The van will allow the Lamberts to continue to transport Ethan to appointments, therapies, and gatherings safely regardless of how KAND impacts his mobility.
Their fundraising success has made the Lamberts grateful for their community’s generosity and the support they’ve received from friends and strangers alike over the past year
“I am reminded of the sacred bond between humans as we experience emotions together. Thank you for being my people as I’ve experienced the most challenging year of my life. For as painful as it has been, I can look back on the blessings, too,” Kassondra said.
Motivated to make the journey a little bit easier for others in similar situations, Kassondra is converting her experiences into critical resources to help fellow rare disease families, including offering fundraising advice and support through her online community The Striped Stable.
If you’d like to join Ethan’s fight and help the Lamberts reach their fundraising goal, make a tax-deductible donation at: https://helphopelive.org/campaign/19147/
Donations are tax deductible to the extent allowed by law, and all funds raised will be managed by the nonprofit to cover verified medical and related expenses. Help Hope Live verifies medical and financial need for every patient.
Help Hope Live is a national nonprofit that specializes in engaging communities in secure, tax-deductible fundraising campaigns for people who need a transplant or are affected by a catastrophic injury or illness. Since 1983, campaigns organized by Help Hope Live have raised over $163 million to pay patient expenses. ###Written by Emily Progin