Noah's SDR surgery

Hi, My name is Mariam, and I am fundraising for my son Noah Babetti.

Noah is a 4-year-old boy with a bubbling personality and a smile that lights up a room. Noah has been a fighter since the day he was born. He is a surviving twin born at 27 weeks, weighing slightly under 2 pounds, and he stayed in the NICU for three months.

Noah missed all his developmental milestones. He was enrolled in Early Intervention at six months old. With his determination and the patience of his therapists, he has managed to reach a certain level of mobility but remained highly dependent. In December last year, Noah was officially diagnosed with Spastic Diplegia Cerebral Palsy (CP), a neurological condition that affects muscle control and coordination. The symptoms that he has presented are increased muscle tone (stiffness) in his legs, tiptoeing, an abnormal gait pattern, and an inability to achieve and maintain balance. Noah has been wearing AFOs (foot and ankle braces) since he was 2, and he received one round of Botox injections right after his diagnosis. The outcome has been excellent but short-lived. As soon as the Botox started wearing off (after four months), he immediately went back to tiptoeing and tripping. He also had recurring falling accidents. Shortly after his CP diagnosis, Noah received an autism diagnosis and is currently non-speaking.

In March 2023, Noah will undergo a life-changing surgery called Selective Dorsal Rhizotomy (SDR) at Memorial Hermann Hospital in Houston. This surgery would permanently eliminate the stiffness in Noah’s body. It will give him a more significant opportunity to walk independently and maintain his mobility later in life. It would also prevent spinal deformities and orthopedic problems that are otherwise likely to occur with every growth spur. The younger the child is, the more successful SDR will be. If this surgery is not done as soon as possible, Noah’s functional abilities will deteriorate, and he will be more likely to undergo surgical procedures and rely on assistive mobility devices. Noah is currently unable to sit properly. He either kneels or W-sits to eat, watch TV, or read a book. Without SDR, it would be impossible to potty-train him or teach him to write.

This surgical procedure is already very costly, and to optimise its outcomes, Noah needs to attend daily physical therapy sessions for a whole year. His insurance will only cover two weekly visits, and we will have to pay the remaining three sessions out of pocket (120$/each, a total of over $15,000 for the coming year). Noah will also attend an intensive therapy program at NAPA Center, a world-renowned pediatric rehabilitation facility. At the Austin location in the summer, Noah will attend three hours of daily occupational, physical, and speech therapy for three weeks. This program and all related travel expenses will total up to $8,000. Noah will benefit from hippotherapy (therapeutic riding) and aquatic therapy to improve his balance and motor coordination. These services are not covered by insurance. He might also need post-operation equipment.

Your generous support is key to helping in improving Noah’s quality of life and boosting his independence.

We are a one-income family of 4, and we cannot afford all the expenses described above. All the donations will cover the surgery’s cost, Noah’s therapy sessions (weekly physical therapy, the 3-week NAPA intensive therapy program, hippotherapy and aquatic therapy), and all the travel and car rentals/lodging/food expenses.

Thank you in advance for your contributions. You have no idea how much it means to our family to have your support!

UPDATE:

Noah had his surgery in April and he was discharged from rehab 3 weeks ago. The first couple of weeks were rough, but he has recovered well and he is progressing amazingly. He was walking at discharge, but he is still very weak and is losing his balance frequently. He needs lots of therapy sessions to gain more strength and improve his mobility.

Here is a picture of him at discharge

And another one during gait training

Thank you for everyone who contributed in making that happen. We appreciate every donation, every word of encouragement, and the heartwarming support that we received throughout this journey. You offered this little boy a precious opportunity to have a better life and thrive. We still have a long way, but I a sure that Noah will be smashing all goals... just like his t-shirt says !!