To celebrate Father's Day we caught up with Scott, a father that Charlie House supports, to find out more about his family, how Charlie House supports them, and what his Father's Day plans are!
Can you tell us a bit about you and your family?
"I'm completely outnumbered at home and live with 3 girls. My wife Mairi, and our 2 daughters Lottie (10) and Elena (6). Living with 3 women would be challenging for most men at the best of time, but throwing an Elena into the mix takes it to a whole other level!
I'm originally from Liverpool and met Mairi (an Aberdonian) while we were living and working in the Middle East. It's funny, when you first meet you never imagine the twists and turns life holds ahead, and the battles you'll face together.
Lottie was born in 2013 and Elena followed in 2016. We're very fortunate to have grandparents, a brother and sister in law, nephews and a close net of friends close by. They all play a significant role in our lives, especially in Elena’s, and for that we’re incredibly grateful."
Could you tell us a bit more about Elena?
"Elena has a genetic condition called CHARGE syndrome. CHARGE syndrome is an inherited disorder caused by a mutation in the DNA-binding protein-7 CHD7 gene. CHARGE syndrome contains numerous conditions including coloboma. In Elena’s case, she has significant colobomas in both eyes and due to their severity Elena is registered blind. Another disorder associated to CHARGE syndrome is heart abnormality. Again, in Elena’s case, she underwent heart surgery at 3 months old. Thankfully, the surgery was successful but Elena will always be under a surveillance plan specified by her cardiologist and may require more surgery in the future. She has undergone upper airway surgery, which was also a success. Elena is also hearing impaired, has sensory processing difficulties and has learning disabilities. The first few years of her life were incredibly challenging and very scary at times, she really is a true hero!"
What are some of the daily challenges you face?
"I find this question hard, because I try and not see challenges when it comes to Elena, it's the way our life is. But the reality is I guess that our family isn't the same as many others. Having a child who is completely reliant on you for all their daily needs and care is hard at times. Knowing that your child is unlikely to ever be fully independent is hard at times. Worrying about your child's health and development and not knowing what may or may not lie ahead is hard at times for sure. Although you’ve described it as challenges, we see it as character building for everyone involved. Elena’s big sister Lottie is a great help and is growing in character and confidence every day, and I couldn’t be prouder!"
What would your ideal Father's Day be? How will you be spending it this year?
"Ideally I would be alone with a cheese board and huge bottle of red wine. The reality will be business as usual. Hopefully there will be some sunshine and a bit of lunch with all the family in Aberdeen… and red wine!"
How did you find out about Charlie House?
"We were introduced to Charlie House by friends who are also supported by Charlie House. We had just arrived back in Aberdeen after a 3 month stint in hospital in Glasgow. Elena was only 7 months old and we had no idea where to turn to really. The team at Charlie House welcomed us with open arms and quickly became a huge support to us all."
What have you done as a family and individually with Charlie House?
"We’ve done quite a bit actually. I represented Charlie House at the Golf Day at St. Andrews in 2022. This involved me losing golf balls, outlining to the guests my family story and situation and explaining the importance and positive impact Charlie House has for a number of families across Aberdeen and the North-east of Scotland. There have been numerous events attended across the past years including the gaming van, glass blowing, Singing Hands, making bath-bombs at LUSH and petting Llamas!
As a family, I cannot stress enough how thankful we are for all the events that the services team at Charlie House put on each year. This is of huge importance, particularly for the siblings of a child with complex requirements. From our perspective, each session has provided Lottie with the opportunity to learn new skills, have fun and make friendships with kids who are experiencing similar circumstances whilst giving her a few hours away from “all the noise” and “commotion” potentially going on at home."
What does Charlie House mean to you?
"Charlie House is a support network like no other. The whole Charlie House team will go above and beyond to help and support in any way. It's a fantastic place to meet families who are in similar circumstances to your own, and is a lifeline to many families like ours. The support they provide is indispensable. My wife Mairi has made life long, solid and special friendships with lots of other Charlie House mums and our eldest daughter Lottie has formed lovely friendships with other siblings. Whether it be support or advice on medical needs, behavioural issues, NHS points of contacts or just a shoulder to cry on or someone to laugh along with you, Charlie House team are always there."
Yourself and Mairi have supported Charlie House in many ways, can you tell us about some of your favourite experiences?
"The 2022 Kids Christmas Party at TECA was great! Elena enjoyed the music and dancing in isolation. Lottie enjoyed dancing with the Toy Story characters, particularly Jessie. Mairi participated in the 2022 Kiltwalk for team Charlie House and loved feeling like she was giving something back through her sponsorship. I even gave it a go this year! This year is the 1st of hopefully many Charlie House Charity Golf Days. I have a team and I’m looking forward to a great day out on the course with 3 of my pals, helping to raise lots of money for CH!"