Finn, our rainbow baby, was born healthy and completed our family. At 16 weeks he was referred to neonatal consultants due to his small head. It was here our dreams for our son were crushed.

In March 2019 Finn was referred for a range of tests. We were not prepared for the uncertainty of his journey and spent 5 months going back and forth from hospital. All tests came back clear. 16 months on, all available tests have unfortunately provided no answers. We have therefore decided to put Finn forward for medical research, hopeful we may one day find answers and maybe help other children like Finn.

Finn has symptoms common with known syndromes. He has severe microcephaly, a rare neurological condition where the head and brain do not grow properly. All genetic investigations have ruled out common causes of microcephaly and with more resources we could access further methods of investigation not currently available on the NHS. Finn also has significant global developmental delay and low muscle tone. He is just learning to sit.

Finn is visually impaired. He is able to track some objects but he does not smile at us or interact. His visual impairment remains a mystery to the ophthalmologists and we are still investigating his hearing and speech which are underdeveloped.

With more resources we could explore other ways to help us find the answers and support our son.

Finn has help from physiotherapy, occupational therapy and vision support, all provided by the NHS. We are very grateful for this but know we need to do more. The therapy centre Blue Skies Ahead has been a lifeline of support and Finn attends regular weekly therapy, however this all comes at a cost.

Just4Children are hoping to raise enough funds to access further therapies including Hyperbaric Oxygen Therapy to support Finns vision and specialist equipment to develop his tone. We also hope to explore stem cell treatment.

Having a child with complex needs and not knowing why is devastating but Finn makes us proud every day and the love he brings to our family is overwhelming.

We are grateful for any help and support.

Thank you

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