Jordyn
Berlin, MA
Age 1
Club Feet, Scoliosis, Epilepsy, Genetic Disorder
Jordyn will be two in February. Immediately after birth, she started showing many signs of stress and was transferred to the NICU where she spent the first 60 days of her life.
Some of the challenges Jordyn has been trying to overcome include club feet, dislocated hips, seizures, chronic lung disease, scoliosis, silent aspiration, and being legally deaf and blind.
Doctors discovered that during her development, she had a mutation of her KCNB1 gene which has caused several of her impairments. There are less than 25 other cases of this genetic disorder known in the world, making treatment and care a challenge, as more research is needed.
Jordyn is a sweet little girl who continues to fight daily to overcome all her obstacles. She has no head or neck control, and suffers from severe acid reflux, which requires suction and oxygen treatments. A specialized custom-designed medical bed is needed to provide Jordyn a safer environment during her frequent seizures, and to help with her other complications.
The ATI Foundation will provide financial assistance toward the purchase of a specialized “Sleep Safe” bed. These can run anywhere from $3,500 to $12,500, and are not covered by insurance.