After six months of preparation and a whole lot of heart, the Hall and Varley families of Kippax Leeds put on a super Polar Express themed Christmas Party to raise funds for CHSF.
Children were invited to attend in their pyjamas and the hosting families dressed as Elves and one very special conductor!
We spoke to heart dad Ken Hall and heart mum Natalie Varley about what inspired their families to fundraise for our cause…
We are a group of families based in Kippax, Leeds who all by chance met through Facebook as we all have children with a congenital heart defect. This Christmas Party fundraising event was run by two of these families with lots of help and support from all of our friends!
Oscar was born in 2014 with undiagnosed TGA (Transposition of the Great Arteries) and within a few minutes of him arriving, the midwives knew there was something wrong.
A few minutes later, the ICU support teams came into our delivery room and Oscar was taken away for assessment. Later that evening, we were told that he either had an infection or there was a problem with his heart.
A number of hours passed by and eventually we were greeted by Dr Dominic Hares who explained Oscars condition and what this would mean for him. Due to the nature of the condition, he performed an emergency balloon septostomy to allow the chambers of the heart to mix.
At day 9, Oscar had a full arterial switch performed by Carin Van Doorn and after a few bumpy days, he made an amazing recovery. We were able to come home from hospital around 10 days post op.
Oscar has regular check-ups at LGI and still under consolation with Dr Hares. We will continue to fundraise for the CHSF as we don’t know if he will need surgery again in the future and knowing this charity is here to support us and other families, it helps make the journey that little bit easier.
Ruby was born in 2009, six weeks before her due date, with no indication at birth there was anything wrong. It wasn’t until her poor feeding, sleepiness and not keeping her feeds down meant more thorough checks. They realised at this stage that her oxygen levels were only reading 57% and she was rushed into NICU.
A cardiologist came to assess her the following day and diagnosed her with complex Tetralogy of Fallot, meaning out of the four defects this condition comes with she had all four of them. We were devastated with this diagnosis, especially when we found that it not only is it incurable and without surgery Ruby wouldn’t survive, but that Ruby would also need continuous surgery and interventions for the rest of her life.
Ruby had her first surgery in September 2009 which allowed us to take her home and meet her family for the first time. She then had more surgery in December 2010 after she deteriorated and was rushed back in. Since then however, Ruby has come on in leaps and bounds. She started school and has done so well.
From 2017 we saw another decline in her health. Ruby started to become tired again and her six monthly check-ups did pick up she was nearing further surgery again. We were able to hold off for another three years as the surgeons hoped that if Ruby could grow a little bigger, they could use bigger valve replacement parts for her heart. This would mean we might go longer again between her next surgeries.
In December 2019 Ruby went back in for surgery and the change in her since then has been astounding. She has shot up in height since and started high school where she is doing really well.
We asked both parents how CHSF has helped their families specifically…
For us, Children’s Heart Surgery Fund helped by providing accommodation in the hospital when Oscar was undergoing surgery. We could see CHSF labels on everything from medical equipment and furniture to essential items like milk and blankets.
Even though we live in Leeds, the accommodation was a huge help as it meant we could be closer to Oscar all the time, rather than travelling home and to the hospital each day.
During our 12 year journey, CHSF have been by our side the whole time. They have provided free accommodation allowing us to stay with Ruby in hospital and free gym passes if we needed some time out to clear our heads.
They funded the MRI research that Ruby took part in to make the MRI process for young children more bearable; our Katie bear and medal gift for Ruby; so much equipment, right down to the microwave and cups, plates etc in the parents room.
They really do think of everything to make our time in hospital a less stressful and worrying time. We can never repay them for how they have supported us and other families.
Before this event, both families have done lots more fundraising for CHSF on their own.
The Halls said:
We have done lots of different fundraising events for the CHSF from previous Christmas Parties, Oscar has completed a 40 Mile bike ride, we have taken part in the Superhero walks, run virtual quizzes over lockdown and we currently have a few ideas for 2022 to help raise more funds.
… and The Varleys said:
Over the years we have done quite a few things for the charity along with taking part in CHSF events such as the annual Superhero Walk. I completed the Leeds Virtual 10k last year, created a ‘Get Fit, Give £5’ JustGiving link to raise funds for all the walks, bike rides, runs we were all doing during lockdown. We also gifted some money that a family member left from their estate after their passing as the charity was always close to their hearts. We have plenty going on next year too!
What advice would you give to anyone wanting to fundraise for CHSF?
We have had a lot of success with different fundraising events as we have a fantastic community in Kippax. Our advice would be check out your local town/village Facebook page (if there is one), speak to businesses about your fundraising ideas and above all, have some fun.
We have been amazed at the support we have had locally so speak to people in your area as I’m sure there is always someone willing to help.
Without CHSF our heart journeys would be very different, they are amazing at what they do and always think of ways they can help and it really does. The research side alone means the surgery Ruby will be having next will now be done as a day case so the steps that are being taken to improve patient care are just brilliant.
CHSF is an amazing charity and continues to do some fantastic work supporting families, children and the hospital with research and new technology meaning better care for the future.
Thank you so much for the continued support of the Hall family and the Varley family as well as everyone who attended the Christmas party or helped on the day. A huge £2770 raised for our heart warriors, unit and families. Incredible!
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