Support the Gray Family: Jaiden's Journey

Help Baby Jaiden Fight ITPA DEE35

On May 7, 2024, Dani, Rob, and their son Ben welcomed a beautiful daughter and sister, Jaiden, into the world. Like any new parents, they dreamed of watching her grow, thrive, and experience all of life's milestones. However, their journey took an unexpected and heartbreaking turn when Jaiden was diagnosed with ITPA DEE35, a rare and devastating neurodegenerative disorder. She is one of only two recorded cases in the world with this specific ITPA gene mutation, making her condition extremely rare. Because of this, there is very little medical information available, and her journey is filled with many unknowns.

What is ITPA DEE35?

ITPA DEE35 is a severe condition that affects brain function and development, leading to early-onset seizures, profound developmental delays, feeding difficulties, and other serious medical challenges. Children with this condition require specialized medical care, therapies, and equipment to manage symptoms and provide the best possible quality of life.

The Challenges Ahead

Dani and Rob are navigating immense emotional and financial stress. The specialized care that Jaiden needs is far beyond what standard health benefits cover. Dani is planning to return to work in January, but they are still waiting to hear back from FSCD about coverage for in-home care. If they do not receive this support, they will have to cover the costs of hiring an LPN or specialized home care professional to watch over Jaiden.

Jaiden has already started therapy with REYU, and while she is showing improvement in her muscle tone, she will need consistent therapy and care to continue making progress. Recurrent pneumonias can significantly shorten lifespan, as children with ITPA DEE35 are prone to aspiration and struggle to clear their lungs due to a weak cough. Early therapies are crucial in helping strengthen Jaiden’s muscles, potentially reducing her reflux and improving her ability to clear her airways.

How Your Support Helps

Every donation will go directly toward:

• Medical Equipment & Treatments – Including seizure medication, therapy tools, and assistive devices.

• Specialized Therapies – Physical, occupational, massage, and speech therapy to help Jaiden develop to her fullest potential. As well as mental health support for the family.

• Home Modifications – To ensure Jaiden’s safety and accessibility at home.

• In-Home Care Costs – If FSCD does not provide funding, hiring an LPN or specialized caregiver will be a significant expense.

• Lost Wages – Helping Dani and Rob take the time they need to be by Jaiden’s side.

Jaiden is a fighter, and with the love and support of family, friends, and kind-hearted donors, we can help give her the best possible care. Any amount, big or small, makes a difference.

Thank you for supporting Jaiden’s journey. Your generosity means the world to this family.