Hi, I’m Kayleigh, Oscar’s mum. I’ve set myself the challenge of running 5k every day from 7th December to 6th January— a total of 155 kilometres in a month — to raise funds for our amazing 3-year-old son, Oscar.

At just 10 days old, Oscar was diagnosed with a rare genetic condition called Spinal Muscular Atrophy (SMA) Type 1. SMA affects his breathing, swallowing, and movement, and comes with a limited life expectancy. Oscar uses a wheelchair to get around, a feeding tube for nutrition, and respiratory equipment including a BiPAP ventilator at night and a cough assist machine daily.

Oscar’s start to life has been tough. At 6 months old, he caught adenovirus and spent a month in intensive care — a very scary time for our family. While we are grateful for life-saving gene therapy, this is not a cure. Oscar will always have SMA, a complex and fragile condition that presents daily challenges.

Instead of the usual play dates and family holidays, the first two years of Oscar's life were spent travelling to Italy every four months for treatment as part of a clinical trial.

Oscar's weeks are filled with therapies — physiotherapy, hydrotherapy, and countless hospital appointments. Oscar is regularly seen by a wide team of specialists at Sheffield Children’s Hospital including the respiratory, spinal and neuromuscular teams. Oscar is also reviewed by local therapists and community nurses. For a bit of down time we are able to use the facilities at Forget Me Not Hospice.

Despite it all, Oscar is a true champ. He faces every appointment and challenge with a smile, showing us every day the true meaning of strength and resilience.

As his parents, it’s our responsibility to ensure he has the best quality of life possible. Sadly, the NHS provides only the basics, so we need to supplement therapies and equipment, which can be very expensive. We also want to raise awareness about SMA and how it impacts our family.

For one month, I’ll be running 5k every day to push myself in solidarity with Oscar, who has to push himself every single day just to move, breathe, and live his best life.

We are fundraising specifically for:

      •     Private physiotherapy sessions, including a week of intensive physio before he starts school next September.

      •     A posturally supportive chair to help him at home.

Follow Oscar’s journey on Instagram: @oscar.the.brave_sma1. I’ll be sharing daily updates of my runs and Oscar’s life with SMA. Please share his story, donate if you can, and if anyone wants to join me for a Jingle Jog in December, get in touch!

Who is Tree of Hope?

We’re fundraising via Tree of Hope to provide donor reassurance, the funds are held in a trust by the charity and can only be released for therapies and equipment to improve Oscar’s quality of life. Gift aid can also be claimed and corporate donations can be made by businesses. A percentage of the funds raised also goes towards the charity.

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.