When our little star Callum was born after a healthy and happy pregnancy and birth experience, something didn't feel right. I asked a midwife to come and look at Callum as he was making funny sounds and was struggling to latch. It was at that point the midwife discovered he had a cleft palate (no roof of the mouth).

Our journey started there with another six weeks in hospital over Christmas before we would be allowed home. Matt and I had to learn to care for Callum's airway (green tube in photos) and his NG feeding tube in the other nostril, to be able to care for him safely.

We thought Callum had Pierre Robin Sequence (PRS) until I fell pregnant the second time and our local midwife kindly arranged some genetic testing. The results came back that Callum had Stickler Syndrome type 1, but neither Matt or I carried the gene nor had any family history, it was just by chance. ***

There are 11 known sub groups of Stickler Syndrome which affects collagen production in particular areas of connective tissue. People living with SS are often affected in four main areas:

1. Eyes: Short sightedness, cataract and, in the majority of cases, a high risk of retinal detachment. It is the most common cause of retinal detachment in children, and the most common cause of retinal detachment running in families

2. Ears: ‘Glue Ear’ and hearing loss which may be either conductive, sensorineural, or commonly a combination of both

3. Musculoskeletal: Hypermobility and progressive arthritis (any joint may be affected but most commonly hips, knees and lower back)

4. Oro-facial: Cleft or high-arch palate. Affected new-born babies may have small nose and under-developed (recessed) chin, although they usually mature as the child grows.

Although many other genetic conditions are rare, the Stickler Syndromes are relatively common, but frequently unrecognised or undiagnosed. Around 50% of those with a diagnosis are being treated for a single symptom and the ‘dots haven’t yet been joined up’, so their diagnosis is likely to be incomplete with the potential for other effects or risks (particularly retinal detachment) to be neglected (www.stickler.org.uk)

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In Callum's 4.5 years of life he's endured more pain and surgeries than many of us adults could comprehend. He had a full palate reconstruction at 11months old, cryotherapy on his eyes at age 3, and a very intrusive procedure 'buccinator flap surgery' at the age of 4.

People often ask how we have all coped with this journey so far and I always say that we have no choice but to be strong for our little warrior, who takes everything within his stride. Running and yoga have given me a coping mechanism through our toughest times and I couldn't think of a better way to bring a positive from Callum's battle, than to raise money for a small and very important charity close to our hearts, Stickler Syndrome UK.

I hope that by running the London Marathon 2025 I can raise awareness of Stickler Syndrome and help others to get a diagnosis to prevent retinal detachment, to raise money for SSUK and to get a little bit of closure for our family in the process.

What happened to us, can happen to anyone about to have a baby, and I want to ensure that people know about the incredible care available for life, and the support networks available through SSUK.