This month, we have committed to raising money for Prader-Willi Syndrome (PWS), a cause that is close to our hearts. To support this important initiative, we organised a raffle within the office, bringing together our team for a common goal: to make a difference in the lives of those affected by PWS.

Our cherished Marketing Specialist, Sarah from mXreality, has a personal connection to this cause. Sarah’s experience and the challenges she has faced bring a deeply personal and inspiring perspective to our fundraising efforts.

Sarah has graciously shared her story with us. Her journey has been marked by resilience, determination, and hope. Through her experiences, she has witnessed first hand the impact that support and awareness can have on individuals living with PWS and their families. Her story has motivated our team to contribute and raise awareness for this cause.

Sarah’s Story

“My son Alex was born in August 2021 and at three weeks old, he was diagnosed with Prader-Willi Syndrome (PWS). Don’t worry if you haven’t heard of it, not many people have. It’s a rare condition that affects only 1 in 22,000 births and there are only around 2,000 people that have PWS in the UK.

There are so many facets to PWS and each one of them is on a spectrum, so even if you have met someone with PWS, it’s unlikely that you’ll be another person with those exact same attributes.

The main symptom that everyone associates with PWS is a hyperphagia. This is a posh medical term for a hunger that will not go away. Telling a person with PWS to not be hungry is like hitting your hand with a hammer and telling yourself not to be in pain. Some people will be aggressive food seekers and others will not be as bothered but food will always be a distraction is it is important that it is controlled. As Alex is only two and a half, this isn’t something we have experienced yet, and it’s likely that the hyperphagia won’t kick in for a few years, but it’s something that we are waiting for, and we are setting the ground rules early with his food intake and diet. This approach will also hopefully help his behaviour in the future as food issues are also closely linked with behavioural challenges in people with PWS.

The main thing that we are experiencing at the moment with Alex is developmental delays, which are likely to continue throughout his life. To what degree, these will be, we don’t know yet, we take every day as it comes. He doesn’t talk yet, so the whole family are learning Makaton to help his communication. We are a family of talkers, so I’m sure he’ll get there one day, but again, we don’t know. In the meantime, Makaton is helping, and he definitely understands what we are talking about!

Our other main challenge at the moment is Alex’s low muscle tone. This is another kicker for people with PWS. Due to their low muscle tone, they need less calories than a typical person (not great for someone that is hungry) and they find exercise more difficult even though it can help manage their weight.

Alex has never crawled; he skipped that stage when he worked out, he could bum shuffle everywhere. He doesn’t stand unaided, and he can’t walk yet. We have specialist chairs and a standing frame at home to help building his strength and aid his posture as we have to watch out for scoliosis (curving of the spine). We are hopeful that one day he will stand and walk, most PWS kids do, but it’s also possible that he won’t, or that he’ll need some sort of support.

His low tone has also affected his sight. It’s common for people with PWS to wear glasses, Alex will start wearing them this month. He rocks them and looks super cute! Hopefully they will make him see a little clearer!

I could go on forever as there are so many elements to this condition, but I’ll leave with this. While Alex has PWS and it will always be a part of our lives, it does not define him. He is the most amazing little boy. He is funny and kind and caring. He knows how to have a joke, how to cuddle his brother when he is sad and has the best laugh. He is a trooper throughout endless hospital appointments and is our little warrior.

There is no cure for PWS but research is an absolute game-changer. There are already some exciting developments for a new drug in the US to help with hyperphagia which the pharma company is trying to bring the UK. Most of all we are hopeful for the future, we are hopeful for Alex.

Thank you to all of the team for putting on this raffle, all the funds will be gratefully received by the charity.”

 

We want to extend our heartfelt thanks to everyone who donated, took the time to read Sarah’s story, and showed their support for our fundraising efforts for Prader-Willi Syndrome (PWS). Your generosity and compassion mean the world to us and to those affected by this condition.

Together, we are making a positive impact and helping to improve the lives of individuals and families dealing with PWS. Your contributions will support vital research and provide essential resources for those in need.

If you would like to donate, Click Here.

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