Help Teddy’s Fight Against cALD
A Fun Day Turned into a Nightmare
On July 21st, our cousin, Nick Connolly and his family went to NYC for a fun day in the park. When they reached the city, Nick’s son Teddy had what appeared to be a seizure. Until that moment, Teddy had been a healthy/happy four-year-old boy and loving big brother to two-year-old Hannah. Teddy was taken to Cornell, where a CT scan of his brain showed an anomaly. Teddy’s mom, Jing Jing, and Teddy stayed at Cornell until Tuesday for an MRI. Tragically, the MRI was nothing less than devastating. They were provided a tentative diagnosis of Cerebral Adrenoleukodystrophy (cALD), an exceedingly rare fatal genetic disease, which was later confirmed by genetic testing.
The Journey for Hope
New York-Cornell was not able to treat Teddy but recommended he be taken to a center where treatment is available. As soon as Nick heard the diagnosis, he immediately determined the best place to seek help for Teddy’s condition would be the Children’s Hospital of Philadelphia (CHOP), one of the centers that could potentially treat and cure Teddy’s awful disease. Nick spoke with the unit’s Director, shared all the medical records from Cornell, and secured a consultation for Tuesday, 7/30. During the consultation Nick and Jing Jing were informed by the Doctor that there is a cure, but Teddy’s condition was far too advanced. Stem cell replacement therapy can slow the progression of the disease, but Teddy does not qualify for this therapy at CHOP. The Director then told my cousin there are only two places that might be able to treat Teddy and recommended they pursue treatment in Minnesota.
A Glimmer of Hope in Minnesota
Again, Nick got on the internet and spoke with the Director of the Center at the University of Minnesota, shared Teddy’s medical file, and obtained an appointment for August 21st. To be considered for stem cell replacement therapy at UMN, the doctor there will need to do his own testing: an MRI with contrast and a spinal tap. This testing is to determine the relative progression of the illness.
Teddy’s Story
Teddy, born February 27th 2020, was a healthy newborn and toddler, exceeding all developmental benchmarks. The first ALD symptom which appeared was when Teddy suffered the brain seizure, the beginning of this nightmare. Tragically, from what we have learned, despite being approved to be added to the newborn genetic testing panel in 2019, ALD screenings of newborns were not routine until December 2022. It’s likely the Covid pandemic played a role in limiting additions to genetic lab testing in 2020.
Teddy and his sister Hannie are fiercely loved by their family; including their grandparents, Kathy and Bill Connolly, Guoqiang Feng and Baoling Peng, aunts, uncles, cousins, and above all, their parents, who will go to the ends of the earth to navigate Teddy through cALD.
How You Can Help
We are starting this fundraising effort to provide urgent financial support to Teddy’s parents, Jing Jing and Nick. The costs for these studies and trials are not sufficiently covered by insurance and are astronomical. We also hope it will allow them to spend quality time together as they continue to search for trials and treatments that may help save the life of their beautiful little boy.
We anticipate their needs may include:
Loss of Income: Unpaid Leaves of Absence
Travel Expenses
Medical Equipment
Respite Care
Medical Expenses
Your compassion and generosity are truly appreciated, and every cent of your hard-earned money will directly benefit Teddy.
We ask that you please keep this amazing family and Teddy in your thoughts and prayers.
Thank you for your love and support from the bottom of our hearts!