Help Us Save Amari’s Future: Support His Journey Toward Independence

In the first 6 months of his life, our beautiful son, Amari, appeared to be a healthy, typical baby. Despite a traumatic labor, hospital neglect & untreated jaundice, we were discharged from the hospital with confidence, believing our baby was healthy and ready to settle at home. For a moment, everything felt perfect. However, we soon faced challenges that no one could explain: excessive vomiting, inconsolable crying, irritability, sleepless nights. These symptoms were initially attributed to colic or reflux disease. It was exhausting for him and for us as well. Our concerns were constantly dismissed by our GP, with one even going as far as to suggest that my wife, as a first-time mum, wasn’t handling motherhood well and that it was all due to her anxiety. She felt disheartened and, for a moment, began to believe it. We know many babies suffer from colic or reflux, but deep down, she knew this wasn’t just that, it couldn’t be. Despite trying everything to alleviate his symptoms, nothing helped.

After persistent advocacy, when Amari was 5 months old, we encountered a compassionate consultant who noticed unusual stiffness and was concerned with his presentation. This led to his admission at our local hospital for monitoring and further investigation. We were transferred to Evelina Children’s Hospital after some tests raised concerns and various specialist evaluations were required. 

After what felt like an eternity and a whole raft of testing, we received devastating news: Amari suffered multiple strokes in his early life, with his brain MRI showing significant signs of damage, everywhere. At this point, the only answer to our questions was a diagnosis of quadriplegic cerebral palsy. Our hearts shattered as we struggled to understand the implications of this news. The cause of brain haemorrhaging remained unclear until a full genome sequencing revealed an ultra-rare genetic mutation, COL4A1, also known as Gould Syndrome. This mutation affects multiple systems in the body and is found in only about 800 cases worldwide, understood by only a handful of medical professionals globally. The mutation was de novo, meaning it occurred spontaneously in Amari; neither my wife nor I carry the mutation. We were hurt, shocked, speechless, heartbroken and as any parent would, we questioned, why us, why Amari…

What does this mean for Amari moving forward?

Sadly, both diagnoses present significant challenges. Amari faces global developmental delays, microcephaly, movement difficulties due to hypertonia, visual impairments, a high risk of epilepsy, repeat strokes, cardiac and renal issues. If he is ever blessed to overcome his movement difficulties and walks, he will be unable to participate in activities that could cause overexertion or trauma to his head, such as sports like football, or just going to the gym- things we often take for granted.

Despite these challenges, we refuse to accept a bleak future for our son. Amari is a fighter, showing resilience from the very beginning. He has already thankfully overcome multiple strokes, untreated jaundice (that also causes damage to the brain) and god only knows what due to insufficient care and investigations at birth. He is a warrior. His strength and infectious smile inspire us every day. We believe he deserves the chance to reach his full potential, even on the difficult path that lies before him.

The Ask:

To give Amari the best chance at achieving independence, he needs specialised specific therapies and equipment that can profoundly impact his motor development. Unfortunately, these are or not covered by the NHS. NHS services are limited, under-resourced, and overworked, making private resources crucial to his early years of development. These private treatments, however, are extremely costly.

It is heartbreaking to watch your child struggle at the simple things. To be told that his prognosis is unknown. To feel powerless in shaping his future is indescribable. There is nothing we wouldn’t do to see Amari happy, pain-free, thriving, and hopefully able to lead as normal a life as possible.

We are seeking your support to continue to provide Amari with life-changing treatments, therapy sessions, and specialised equipment. Every donation, no matter the size, will directly contribute to his care and development. As much as we personally fund all of this, the prices are ever increasing and we don’t want to fall short in providing the best chances at rehabilitation, especially during the prime years of neuroplasticity, which is the brains ability to rewire and create new connections that compensate for the damaged areas. 

To anyone who wishes to support Amari’s journey, we are eternally grateful. Thank you for your kindness, generosity and support as we embark on this journey to give Amari the best possible opportunities in life. If you'd like to follow Amari’s progress, feel free to follow his Instagram page @themightyamari.

With love,

Leon, Teema, and Amari♥️