The Butterfly Foundation supports children who suffer from a condition known as epidermolysis bullosa. The most severe form of EB means that those affected grow up with skin as delicate as a butterfly’s wing. The Foundation support a brave little boy called Mason White who, despite his fragile condition, has huge strength of character. The Foundation aims are as follows:
EB is a rare genetic disorder, but through the Foundation, they hope to educate others into learning more about the condition. For anyone suffering from the disorder, any minor friction could cause painful blisters, some of which appear inside the mouth. Symptoms also include scarring, which may contain small white spots known as milia.
The sticky protein known as collagen, which binds layers of skin together is missing in individuals who suffer from EB. The disorder is generally detected at birth, and in some cases, a baby will not have skin to skin contact with their parents for years.
The Butterfly Foundation aims to get individuals and families clued up on the disorder and its levels of severity. The three main types are epidermolysis bullosa simplex (EBS), dystrophic epidermolysis bullosa (DEB) and junctional epidermolysis bullosa (JEB).
EB is not a condition that is regularly spoken about in the public sphere due to its rarity, but the Foundation hopes to change that. The team at K4 Global have thrown their support behind little Mason, who has been raising awareness of his own condition alongside parents Kerry and Rod White. Mason lives every day knowing that only the slightest knock could cause his skin to tear.
His skin is so fragile that he wears bandages and sits on a sheepskin lining for protection. Mason’s bravery knows no bounds, and despite the fact that he requires round-the-clock care and has undergone multiple operations, he remains optimistic.
The Butterfly Foundation has joined Mason’s fight against the condition and hopes to make the public aware of the daily struggle. For Mason, he wakes up every morning knowing that he is vulnerable to serious infections, and his future remains uncertain. This is why the Foundation is in place – to raise awareness of the disorder and the effects it has on families.
After hearing Mason’s story, the team and the Foundation were left inspired. Research is being conducted into finding a cure for EB, but that can only progress with the backing of others. The Butterfly Foundation lends support in the hope that one day, children like Mason will have a better quality of life.
Funding is needed for research to continue, but the Foundation also backs the need for more support in caring for children who suffer from EB. If there is an increased level of care, then it will make everyday living more bearable for all involved. Plenty of the burden falls on the child’s parents, but with the extra support, they too can live a more structured life.