Colton’s Journey: Overcoming Delays and Thriving with United Cerebral Palsy (UCP)

Early Signs of Delays and Medical Referrals

Colton started showing clear signs of delays around 6 months of age. We noticed he wasn’t reaching developmental milestones such as holding his head up, attempting to sit, or waving his arms and legs like other babies. Despite expressing our concerns to his pediatrician, she dismissed them as “first-time mom” worries. However, we persisted, especially because he was struggling to gain weight. Finally, when he was about 10 months old, she agreed to refer him to Cranial Technologies for a DocBand due to plagiocephaly caused by his inability to lift his head.

The clinic was concerned about excess fluid on his brain and required an MRI to rule out hydrocephalus before fitting him with a DocBand. The day we received the MRI results changed our lives.

Diagnoses and Early Intervention with UCP

The neurosurgeon confirmed that there was no hydrocephalus, which was a relief. However, he explained that the left side of Colton’s brain wasn’t growing as expected, with more fluid-filled spaces than brain matter. This side of the brain is responsible for analytic thought, language, reasoning, and more. It was devastating news, but we remained hopeful.

We immediately began Early Intervention therapies with UCP, which proved to be life-changing for Colton and our entire family. The therapists at UCP have been truly amazing in their dedication and expertise.

Incredible Progress and Unique Diagnoses

Now 5 years old, Colton has made incredible gains during his 4 years with UCP. The therapists have been instrumental in identifying issues that led to important diagnoses. For example, his speech therapist noticed signs of silent aspiration and urged us to get a barium swallow study, which ultimately led to G-tube surgery. In the past 4 years, Colton has gone from limited movement to independent exploration of the world around him. He can push his wheelchair, ride a modified bike, eat bites of food, and play with toys while sitting up unassisted.

Recently, WES testing resulted in a unique diagnosis. Colton has an ultra-rare de novo chromosome disorder on his TRIO gene, known as MRD44. Only one other documented case exists in the world with the same precise mutation. Although the lack of research makes it challenging, Colton continues to fight every day.

UCP: A Lifeline and Source of Support

UCP has been the center of our journey, providing unwavering support. We visit almost every single day and will continue to do so as long as we can. Colton’s therapists have been kind, gentle, and motivating, pushing him to reach his full potential while respecting his limits. UCP has given me, as his mother, the confidence to never lose hope and to fight alongside him, knowing that he can live a life without limits.

– Maureen, Colton’s Mom