Jordan Weber Medical Fund
Donation protected
Jordan was diagnosed with Kelley-Seegmiller, a rare enzyme deficiency causing severe gout and kidney stone attacks. He was diagnosed at a young age and has been treated by doctors at Children's Mercy, Johns Hopkins, and KU Medical Center.
At Age 5 he had an episode of acute kidney failure resulting in hospitalization at Children's Mercy. It was at this time doctors noticed the enzyme deficiency, and doctors explained that he could experience long term effects of gout and arthritis. Jordan would go on to experience another episode of acute kidney failure at the age of 6, and continue to be followed by the physicians at Children's Mercy
By age 10, Jordan was referred by Children's Mercy to take part in a study at Johns Hopkins, which was some of the first research to be done on the genetics dealing with Lesch-Nyhan syndrome, and more importantly Kelley-Seegmiller syndrome. It was confirmed that the enzyme deficiency came from his mother's side, however her family history at this point was unknown, due to her being adopted. It was also discovered that Jordan's enzyme change was the first known case of its kind.
Jordan started experiencing the physical ramifications of his diagnosis soon after graduating high school, when he started passing kidney stones. This was the beginning of many trips to the emergency room, and surgeries to remove his kidney stones. In 2015, he started seeing specialist at KU Medical Center for kidney stones and gout, which he started experiencing a couple years prior. KU has followed him to this day.
Jordan has recently been experiencing an increase in frequency and severity of his gout, limiting his ability to work, and is working 1 day a week in order to keep his insurance. His gout is causing so much pain and inflammation in his joints that using a cane or walker have become a necessity to help him walk. Doctors at KU feel like they have done all they can to prevent his gout attacks and limit his pain, which is why they are now referring him to the Mayo Clinic.
Your donations will go to help cover outstanding medical bills, the trip and stay at Mayo Clinic, and other various costs associated with his health.
To provide additional support, follow Jordan's journey at https://www.caringbridge.org/public/jordanweber
At Age 5 he had an episode of acute kidney failure resulting in hospitalization at Children's Mercy. It was at this time doctors noticed the enzyme deficiency, and doctors explained that he could experience long term effects of gout and arthritis. Jordan would go on to experience another episode of acute kidney failure at the age of 6, and continue to be followed by the physicians at Children's Mercy
By age 10, Jordan was referred by Children's Mercy to take part in a study at Johns Hopkins, which was some of the first research to be done on the genetics dealing with Lesch-Nyhan syndrome, and more importantly Kelley-Seegmiller syndrome. It was confirmed that the enzyme deficiency came from his mother's side, however her family history at this point was unknown, due to her being adopted. It was also discovered that Jordan's enzyme change was the first known case of its kind.
Jordan started experiencing the physical ramifications of his diagnosis soon after graduating high school, when he started passing kidney stones. This was the beginning of many trips to the emergency room, and surgeries to remove his kidney stones. In 2015, he started seeing specialist at KU Medical Center for kidney stones and gout, which he started experiencing a couple years prior. KU has followed him to this day.
Jordan has recently been experiencing an increase in frequency and severity of his gout, limiting his ability to work, and is working 1 day a week in order to keep his insurance. His gout is causing so much pain and inflammation in his joints that using a cane or walker have become a necessity to help him walk. Doctors at KU feel like they have done all they can to prevent his gout attacks and limit his pain, which is why they are now referring him to the Mayo Clinic.
Your donations will go to help cover outstanding medical bills, the trip and stay at Mayo Clinic, and other various costs associated with his health.
To provide additional support, follow Jordan's journey at https://www.caringbridge.org/public/jordanweber
Organizer and beneficiary
Tyler Brumble
Organizer
Pleasant Hill, MO
Jordan Weber
Beneficiary