Conlon’s new charity partnership to support treatment for Darwen boy with rare disease
Conlon Construction has selected its new charity partner, following a company-wide vote that resulted in overwhelming support for The Annabelle Rose Foundation for Spinal Muscular Atrophy.
Spinal muscular atrophy (SMA) is a genetic condition that causes muscle weakness and problems with movement. An incurable disease, it occurs due to the nerve cells becoming damaged, breaking the link between the brain and the muscles.
Over the next 12 months, Conlon Construction will hold a series of events to raise funds and awareness for the neuromuscular disease. All the money raised will go towards supporting six-year-old Leyton Wright, from Darwen, who was diagnosed with SMA as a baby.
Leyton’s dad, Dominic Wright, works for Conlon Construction’s sister company, Architectural Glazing & Facades in Preston, as an estimator. He and his wife, Tammy, were initially told that Leyton was being a ‘lazy baby boy’ when he began not hitting certain development milestones before his first birthday.
Not content with this feedback, Dominic and Tammy pushed for a second opinion and were later told that Leyton had the progressive condition, Type 2 SMA, and that he was unlikely to live beyond his teens.
Due to the condition, Leyton has never been able to walk or crawl and the family has had to relocate to enable Leyton to have a fully accessible home with the equipment he needs. Thanks to the generosity of people across Lancashire, £22,000 was raised to buy the powered wheelchair that Leyton relies on to move around.
Leyton is currently receiving potentially life-altering treatment through clinical trials in France. The trials, which started in July 2018 and last for two years, require a minimum of 38 visits to the treatment centre in Paris. Dominic and Tammy must fund all travel costs, which range from £100 to £600 a trip. The family also need to purchase much-needed equipment to improve Leyton’s quality of life.
Dominic explains: “Leyton has always been such a happy little boy and it’s inspiring that even on the difficult days, he doesn’t let his condition get the better of him.
“We are already seeing improvements since the Paris trials began and it’s a huge weight off our shoulders knowing that we have the support of everyone from Conlon Construction. Their generous donations mean that we can concentrate on the next year of treatment without the added stress of funding our travel and the equipment that Leyton needs to live a normal life.”
Only recently, the National Institute for the Health Care Excellence (NICE) recommended that Spinraza, also known as Nusinersen, is used as standard treatment for all patients with SMA. Previously, the drug wasn’t approved by regulators for NHS use due to it being deemed too expensive, despite its widespread use in the United States and Europe.
Neil Conlon of Conlon Construction added: “Being involved in helping the local community is something that we have a long-standing commitment to, and this cause received a huge level of support from the team when it was put forward.
“Leyton’s story has touched everyone at Conlon Construction and we’re keen to support Leyton, Dominic and Tammy however we can. We’re hoping that through our fundraising activities, we can help to alleviate the financial burden on families affected by SMA and raise awareness of the condition, which is the number one genetic killer of babies under two years of age.”
This new partnership follows Conlon Construction’s successful collaboration with local prostate cancer support organisation, The Walnut Group, which provides specialist advice and support to those diagnosed with the disease.
During the partnership, Conlon Construction co-hosted several free screening events and tested more than 750 Lancashire men for prostate cancer.
The Annabelle Rose Foundation for Spinal Muscular Atrophy was set up by Charlotte and Wayne Burfitt in 2010, following the loss of their daughter from SMA at just seven months old, and work closely with the Wright family.