Alex and Charmaine Twine started a Family Fund for their sons Josh and Ethan, who both have Duchenne muscular dystrophy, named Josh and Ethan’s Journey.
Josh, 8 years old, and Ethan, 6, both have interests the same as any other boys their age: They enjoy football, food, and playing computer games. Unfortunately, their muscle-wasting condition has made their childhood different to many others.
Problems with Josh’s development were noticed by Alex and Charmaine at an early age:
Josh was behind in his physical development so at the age of 3 we were referred to the Pediatrician by our GP. They then decided to do a biopsy and the blood test came back very high.”
Josh was diagnosed with Duchenne not long after. Ethan’s diagnosis followed just two weeks later.
As part of their treatment, Josh and Ethan both receive steroid 5 days per week while at school. Their teachers have been trained by the family’s physio to give the boys steroids.
Dr Neil Thomas mentioned that we could get involved with the charity to meet other families, after which we went to a Southampton Muscle Group Meeting. We had questions about getting Josh on a health care plan, so we spoke to the Care and Advocacy team and they pointed me in the right direction. We’ve also been involved with fundraising and had support of the Regional Development Managers. We’ve been in the local press and on local radio talking about the boys condition and fundraising events, and also about not having enough help for newly diagnosed families. “
All of the Twine family’s fundraising will go towards the Duchenne Research Breakthrough Fund, and they have already done a lot in their efforts to raise funds for the cause. From quiz nights to golf dars, long distance cycle rides to runs, they have done it all. But they’re not stopping there. 2016 will be a big year for Josh and Ethan’s Journey, with a huge summer ball planned for the summer.
Josh and Ethan’s Journey has just begun.