ANOTHER YEAR OF WAITING - yes I ran the London Landmark Half Marathon last year, so many of you would have read our story. A year on and we are no further forward. We still have no answers or any support for Otis. Otis is waiting to see a paediatric neuropsychiatrist, he’s waiting for the results of his genetic testing (bloods were sent Feb 2024) and he’s still waiting for an ADHD and autism assessment (referral was accepted Nov 2023!). I’ve known he was disabled since birth yet he’ll be starting school this September with no diagnosis. It’s simply heartbreaking.

BIT ABOUT OTIS - Otis presents a lot like a child with Smith Magenis Syndrome. He has a really loving and engaging personality, but he also has behavioural problems. He is severely anxious, incredibly impulsive and he has a strong desire to control things that simply are outside his control. This hugely limits what we can do and where we can go. He is also sadly very aggressive and violent, and I regularly take a beating for things I can’t control. He goes from extremely happy to extremely sad. Extremely loving to extremely violent (hence my third photo). I know he can’t help his emotions, that is his disability but that doesn’t make it any easier!

There is never a day that goes past where he doesn’t make me laugh, he’s joyful, whitty, fun and loving. That said, his behaviours are beyond anything most people could ever comprehend, and as a result he will require life long support due to his psychiatric disorder. It’s very isolating and I worry about his future.

THE FAILED SYSTEM - To say the child development system is not fit for purpose is an understatement. I’m simply floored by how Otis is (and other vulnerable children are) somehow placed at the back of the queue. It’s not right that neurodevelopment conditions have wait times of 24+ months to see specialists.

When the education, health and social care systems let you down the only place to turn to is patient advocacy groups (PAGs).

PATIENT ADVOCACY GROUPS - The ONLY support we have had for Otis is through the Smith Magenis Syndrome (SMS) Foundation UK. The SMS Foundation is a PAG and it exists to support families living with SMS to have a fulfilling future. As a PAG it relies on fundraising and donations to exist. Without advice from the SMS Foundation I wouldn’t have managed to get an gastroenterologist, I wouldn’t understand how to navigate the NHS, child development centres and I wouldn’t be as empowered to advocate for Otis.

WHAT IS SMS? Some people describe SMS as a bit like Down Syndrome with traits of autism. In short it’s a genetic neurodevelopmental condition that impacts learning, sleep, emotions, and behaviour.

NOT SO RARE - Over the last 4 years, I've learned that my story isn't so rare. One in 25 babies will be born with a genetic condition (Otis is that one). One in 17 of us will be affected by a rare disease at some point in our life (Otis is that one). On average it takes five years for a diagnosis for a rare genetic ‘disease’ (Otis is still not doagnosed). The Office of National Statistics states that 3% people have a learning disability (Otis will be in that 3%). I could go on… Essentially inclusion and acceptance is vital.

Ok, so rant over. Every penny I raise by running the LLHM 2025 will go towards supporting families living with SMS. Invisible disabilities are real!

Thank you.