The Judson Boy Fund
Donation protected
Our sweet sister Jakelle and brother in law Kelley recently found out that their two youngest boys, Beckham and Arlo Judson were recently diagnosed with a rare genetic disorder known as Schaaf-Yang Syndrome. This disorder affects many parts of the body, including; feeding difficulties, low muscle tone, Pituitary Gland issues causing excessive weight gain, temperature regulation difficulties, developmental delays/intellectual disabilities, severe Sleep Apnea, and Autism.
Due to the rareness of this disorder, research and education are almost non-existent, which is causing difficulties in many aspects moving forward. Individuals with Schaaf-Yang have hypothalamic dysfunction which causes multiple hormone deficiencies. This family has been fighting for their boys to get the treatment they need to help with all the issues listed above. Currently, researchers have discovered a treatment using a Growth Hormone that has proven to have positive effects, including decreased fat mass, increased muscle mass, increased strength and tone, improvement in lipid profile, increased bone mineral density, and body composition.
After a long fight with insurance, this specific medication has been denied due to the lack of research and FDA approval. This medication can range anywhere from $5,000-$15,000 per month. Both Beckham and Arlo will need this medication, and you can imagine the discouragement it brings to not have access to this treatment due to the financial obligations. There are various trials involved with this disorder and this GoFundMe would specifically help this family put the donations towards the uncovered medication, medical debt, and any equipment needed moving forward. It is going to be a long road for these boys as they are still in the beginning stages of treatment and research. Any and all help will be appreciated as it will benefit Beckham and Arlo immensely. With less than 500 cases worldwide, this genetic disorder has many unknowns. Every bit will count and we are certain these services will bless the lives of these boys and their family more than you can imagine.
Due to the rareness of this disorder, research and education are almost non-existent, which is causing difficulties in many aspects moving forward. Individuals with Schaaf-Yang have hypothalamic dysfunction which causes multiple hormone deficiencies. This family has been fighting for their boys to get the treatment they need to help with all the issues listed above. Currently, researchers have discovered a treatment using a Growth Hormone that has proven to have positive effects, including decreased fat mass, increased muscle mass, increased strength and tone, improvement in lipid profile, increased bone mineral density, and body composition.
After a long fight with insurance, this specific medication has been denied due to the lack of research and FDA approval. This medication can range anywhere from $5,000-$15,000 per month. Both Beckham and Arlo will need this medication, and you can imagine the discouragement it brings to not have access to this treatment due to the financial obligations. There are various trials involved with this disorder and this GoFundMe would specifically help this family put the donations towards the uncovered medication, medical debt, and any equipment needed moving forward. It is going to be a long road for these boys as they are still in the beginning stages of treatment and research. Any and all help will be appreciated as it will benefit Beckham and Arlo immensely. With less than 500 cases worldwide, this genetic disorder has many unknowns. Every bit will count and we are certain these services will bless the lives of these boys and their family more than you can imagine.
Organizer and beneficiary
Chelsea Jensen
Organizer
American Fork, UT
Jakelle Judson
Beneficiary