In 2022, my eldest son Ralph was diagnosed with two life-limiting rare genetic conditions, Smith-Lemli-Opitz syndrome (SLOS) and Empty Sella Syndrome (ESS), both of which have no treatment or cure. As part of these conditions, Ralph is smaller than his friends, has multiple physical impairments, including a cleft lip, joined toes, extensive dental deformities and an empty pituitary gland in his brain which effects his development/puberty. Alongside the physical effects, as part of these conditions, Ralph has autistic traits and suffers from high-functioning anxiety.

Ralph wasn’t diagnosed until he was 11 years old, but since then he has been under the excellent care of Great Ormond Street Hospital (GOSH) who have provided the best care to him and support to my wife Nina and I. Ralph has to attend regular medical appointments due to the multiple parts of his body that can be affected by SLOS and ESS.

To say thank-you for the amazing and on-going care Ralph has had, and continues to receive, and raise awareness of SLOS and ESS, I am taking on the biggest challenge of my life. A half ironman triathlon. I will swim 1,900m (in the Thames), cycle 90km and finish off with a half marathon (21.3km). This will by far the hardest and most difficult thing I have ever done.

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