A Christmas Story


 

Caroline Harding decided to throw a Christmas party. She wanted to do it for the many young people, who like her son Columbus, had a rare condition known as ectodermic dysplasia, but it was something she also wanted to do for herself. For Harding, it was a way to overcome the feeling of powerless she felt following the diagnosis of her son.

Before Harding left the hospital with her newborn, it was clear there was something wrong with Columbus, but it would take about a year to get a diagnosis. Columbus had a rare genetic disease known as hypohidrotic ectodermal dysplasia, one of many forms of ectodermal dysplasia. People with the condition have little if any hair, few if any teeth, lack sweat glands, and have limited ability to produce saliva and tears. About one out of three infants will die in the first 18 months of life from suffocation or overheating while they sleep.

Harding wanted to connect with other families who knew what was ahead for her son, create informal networks, and do something nice for this community of which she now found herself a part.

She reached out to the Ecotodermal Dysplasia Society, a Gloucestershire, United Kingdom-based charity and offered to organize a Christmas party. They agreed to host the event, and she raised money from families and local businesses to fund it. In all, she raised about $800. It wasn’t going to fund a cure for the condition, but it was enough to throw a party.

I interviewed Harding two years ago after hearing her speak at the 2015 Global Genes Tribute to Champions of Hope Gala. She was there to introduce the Global Genes’ RARE Patient Impact Grant Program, which was created to fund projects that fulfill unmet needs of the rare community. These are small grants ranging from $100 to $15,000 for funding projects spear-headed by members of specific rare disease organizations who develop innovative solutions to challenges rare disease patients face. The intent is to fund work capable of making tangible differences in the lives of rare disease patients and caregivers.

Harding’s story has stuck with me since and I think of her during this time of year when many worthwhile organizations are making asks. People often focus on the large amounts of money it takes to conduct biomedical research and develop therapeutics. For me, Harding is a reminder of the power that small gifts can make.

About 45 families came to the Christmas party from all over the United Kingdom to celebrate the holiday together. These were people who didn’t know each other, but the parents who attended saw in the other children with ecotdermal dysplasia their own kids. People with the condition have distinct facial features, such as a prominent forehead, thick lips and flattened bridge of the nose. They all looked as if they were members of a large family.

Kids with the condition can be self-conscious because of their appearance, but that night everyone let their hair down as it were. No one wore wigs. It didn’t matter if you were toothless. It was a safe environment where no one judged anyone. It was a where people with the condition could be themselves and not worry about how they looked.

The party was a great success. It was intimate. It was a place that everyone could be at ease. Santa even made an appearance.

But it was many months later that the head of the society sent Harding a letter. She wanted to share a call she had just received from the mother of a young man who had attended the party. He had been suffering from depression. He had taken to doing physical harm to himself, and wondered whether life was worth living.

At the party he met a man who had a far worse case ectodermal dysplasia. Despite the severity of his condition, the man had a wife and children, and he was a successful businessman. For the young man, it was an eye-opener. He became inspired by the man he met at the party. They stayed in touch and a friendship developed. The boy realized that his life didn’t have to be defined by how he looked, but rather what he made of it. The woman thanked the society for the party and the change it had made in her son. The experience transformed him, and it may have even saved his life.

The effect of that was profound on Harding as well. She left the private sector to work for a rare disease nonprofit. Today she is CEO of Genetic Disorders UK.

Global Genes is still short of its goal of raising $100,000 to fund the next round of its RARE Patient Impact Grant Program. If you’d like to learn more about the program, or donate, go to the giving page on the Global Genes website. As we go through this season of giving, let Harding be a reminder to you that small gifts can have big impacts.  

November 30, 2017

Filed Under: Global Genes, Global Genes Programs, Insights, Patient Stories, People & Organizations, Rare Community

Speak Your Mind

*

be-a-guest-blogger

Follow us on Twitter