Ty Hafan

#family friday

pauline's disneyland adventure

pauline run disney

At the beginning of April this year, I noticed a fundraising Disneyland Paris Run Weekend on the list of upcoming events on the Tŷ Hafan website. I’ve never been able to run, but Tŷ Hafan has done so much for me and my family, this was an opportunity to give something back. It didn’t hurt at all that it was in Disneyland Paris, somewhere we’d thought of visiting but never gotten around to. My husband, Stephen, was happy to sign up to anything that would get me exercising and our daughter, Jennifer, loves theme park thrill rides. So it was decided the Harvey Family was going to do a sponsored run in aid of Tŷ Hafan Children’s Hospice.

Why we support Tŷ Hafan

When my eldest, Abigail, was born in 2004, she was quickly diagnosed with a rare genetic metabolic disorder called Mucolipidosis Type 2. She was severely disabled and needed 24/7 care. The condition is degenerative and lifespan is significantly shortened. Mine and my husband’s lives changed overnight. The emotional rug been not only pulled out from under our feet, but it felt liked it had been rolled up and used to beat us as well. We lived in fear and panic in those early days. Abigail had some early breathing and swallow problems, we had a lot to learn about the medical aspects of her care, we were new parents and we had to learn to accept that our daughter’s future was not going to be “normal”.

What we needed more than anything at this point was support; practical support and emotional support in spades. A community nurse told us that we “qualified” for a referral to Tŷ Hafan, a children’s hospice in Cardiff. I remember being hit by a wall of fear and panic. Hospices are places people go to die, we weren’t ready to face that yet. We could only try and cope with today. We took a leaflet and filed it away, not wanting to think about it.

Fast-forward five years, Abigail had a major health event and ended up with a long stay in intensive care and a six-month stay at the University Hospital of Wales. During this time I stayed in hospital with her. During this time I spoke with other mums in similar circumstances who all recommended Tŷ Hafan, as the end-of-life care is only a small part of what Tŷ Hafan do, they support families’ right from diagnosis! If only we’d known.

Once we joined the Tŷ Hafan family we found out what wonderful people they are and the miracles they perform every day. Our outreach worker, Tracy, worked with the hospital to agree a system which would allow Abigail to visit Tŷ Hafan one day a week, for a few hours, with myself, Stephen and Jennifer (age two). This allowed us to be a family again away from the sterile hospital environment. During her first visit Abigail used the Sound Beam in the music room. She soon realised that her movement was creating the sound that was filling the room and she smiled! I burst into tears. When she came out of intensive care she had lost all movement apart from her eyes, she had regained a small amount of limb movement and she could open and close her mouth but this was the first time she had smiled since she became ill! It was then that I knew she would recover. After every visit to Tŷ Hafan her health improved and she was soon allowed home.

Tŷ Hafan supported us throughout Abigail’s short life, they were there at the end, and they continue to support us in bereavement. We want to raise awareness of the wonderful work Tŷ Hafan does so that other families won’t shy away from making that first contact, so that they too can be bolstered by the love and support available at Tŷ Hafan.

RunDisney September 2018

The arrangements were really flexible. There were different runs to choose from; 5k, 10k, half marathon and combinations there of, and even kid’s runs. You could let Tŷ Hafan organise the hotel and travel arrangements, or you could do it yourself. You could fund the trip through sponsorship, or you could self-fund. You could even bring along spectators. We decided to do the 5k run, which was suitable for beginners, let Tŷ Hafan make all the arrangements and self fund.

pauline and family

I had not done anything more strenuous than waddle back and fore to the fridge in years, but I was determined and I had time. So I set about training, doing 5k three times a week. At first I couldn’t even walk it without frequently stopping for a rest. Soon I could walk 5k without stopping. Then I increased my speed and finally I introduced periods of running. I tried to train every day, slowly increasing the percentage ran. By the time September rolled around I was doing 5k in a respectable beginners time of 46 minutes. Stephen and Jennifer didn’t need to train at all, and they were faster than me, but considering where I started I was extremely proud.

We collected sponsorship from friends, family and colleagues and some local businesses where kind enough to display collection boxes for us, thank you The Afan Lodge, Duffryn Rhondda Post Office and the Gwyn Hall Neath. I supplied butterfly fridge magnets as gifts for anyone who donated.

On Thursday 20 September we travelled by bus from Tŷ Hafan to Dover, ferry across to France and back on the bus to Paris. I was worried about such a long bus journey, but it was surprisingly enjoyable. I found it more comfortable than a car and the Disney films we watched set the mood nicely. We stayed in the Santa Fe Disney Hotel which is themed around the Cars films. Everywhere you looked there were references to Cars, the lights were in the shape of traffic cones, the paths were painted as roads, and even the pattern on the corridor carpets was made up of traffic cones.

Friday morning started with a huge breakfast buffet, and then we hit Disney Studios. Luckily for us we had met a mum and daughter, Alyson and Rebekah, on the bus, who were more than happy to accompany Jennifer on all the thrill rides that Stephen and I wouldn’t do. Midmorning we had to get our bib and t-shirt for the run, the queue was immense, but once the doors opened it was so well organised that we got through in no time at all. Then back to the park for more rides.

We needed to be changed and ready for the 5k at 7:00pm that evening. Our bibs told us which corral we were to wait in. There were thousands and thousands of runners. All ages, shapes and sizes. Most were in Disney related costume. Again, everything was very well organised. The start was delayed by about an hour, I think because some runners were delayed and arrived very late, and it was starting to get cold. But once we started we soon warmed up.

I needn’t have worried about maintaining a good pace as there were so many people, the route was quite congested. The route took us through both Disneyland parks and was lined with Disney staff cheering everyone on. The atmosphere was electric. There were many photo opportunities along the route with some rarely seen characters. We also got to run behind the scenes and access places you would not normally be able to go, such as the route the studio tour tram takes. The parks look very different at night, beautifully lit, the route was clearly marked and barriered, so there was no chance of getting lost. At the end of the run was a huge cheering crowd, a medal for completing it and much needed drinks and snacks. We headed back to the hotel at around 11:00pm, thoroughly exhausted, but quite proud of ourselves.

run disney

The following day was the 10k and the kid’s races which some of our group took part in. We, however, spent a lovely day wandering round the two parks trying out all the rides. I particularly enjoyed the simulator rides such as; Star Tours and Ratatouille, as you got all the thrill but didn’t get thrown around too much. That evening a lot of the group got together for a pasta buffet at one of the hotels. This gave everyone an opportunity to catch-up and exchange run and ride stories.

Sunday morning brought the half marathon. A real test of endurance after two park days! Some of the Tŷ Hafan runners had completed the 5k and/or 10k as well earlier in the weekend! Then we were all back on the bus to travel home, watching Disney films all the way and talking about which distances we were going to run at RunDisney 2019!

As I write this donations are still coming in, but the Harvey Family has raised in excess of £1,000 for Tŷ Hafan.

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