Just before their wedding in May 2017, Louise and Mitchell received a call to meet with the neurology and respiratory teams in Edinburgh regarding their young son, Leo.
Leo's Pride Family Fund
Leo, who loved being around other children and people, enjoyed watching Paw Patrol and Blaze and The Monster Machines on TV and playing with cars. He experienced a traumatic birth and required emergency admission to the Special Care Baby Unit, where he was given CPAP ventilation. During his stay, it was noticed that Leo’s muscles, especially his neck muscles, were weak. After 11 days in the Special Care Baby Unit, Leo was discharged and monitored closely by community paediatricians.
Leo appeared to be doing well until he was 11 months old, when he became ill with respiratory tract infections, leading to intubation and a transfer to Edinburgh for treatment. This continued over four months, involving four episodes of intubation and multiple trips between Inverness and Edinburgh.
During his third month in hospital, it was suspected that Leo might be aspirating, and he underwent gastrostomy and fundoplication surgery. During his stay in intensive care in Edinburgh, following a failed extubation, further testing was conducted. The neurology team performed an EMG test on Leo, revealing a problem with his neuromuscular junction, leading them to suspect Congenital Myasthenia Syndrome (CMS). However, genetic testing in Oxford for CMS-related genes ruled this out.
In May 2017, Louise and Mitchell were informed that Leo’s FKRP gene showed two variations, diagnosing him with Congenital Muscular Dystrophy Type 1C. Louise and Mitchell had mixed emotions, but their love for Leo remained unchanged. They were determined to take each day as it came.
Leo’s Pride
In response to Leo’s diagnosis, Louise and Mitchell established Leo’s Pride, a family fund dedicated to raising awareness and funds to support Muscular Dystrophy UK’s work on Congenital Muscular Dystrophy research.
Sadly, Leo passed away in July 2019 at just four years old. He left a lasting impact on all who knew him. In his memory, Leo’s Pride continues to raise awareness and donations, ensuring Leo’s legacy lives on to help make every day count for those with Congenital Muscular Dystrophy. Leo’s Pride now approaches its last year of fundraising, throughout 2025..
Thank you for your support. Net profits from the family’s fundraising will go towards research into Congenital Muscular Dystrophy Type 1C.
