Sun, sponges and a ‘superb weekend’

The weather was firmly on our side for the first-ever PHact Finding and Fun Weekend for children with PH under the care of Great Ormond Street Children’s Hospital (GOSH).

Click here to watch a special film of the day

Held at the beautiful Heythrop Park Resort in Oxfordshire over the sunny early May Bank Holiday weekend, the event – which was funded by the PHA UK – saw families relax, learn more about PH, make friends and enjoy precious time away together.

Activities for children and teenagers included arts and crafts, street dance, African drumming, circus skills and mini golf. A programme of educational talks by experts from GOSH gave adults insight into research and advice on talking to siblings, and a Q&A panel session addressed a range of questions submitted by parents.

Before the Sunday night dinner and disco, children cooled off in the heat by throwing soaking sponges at Dr Shahin Moledina, consultant at GOSH, and Iain Armstrong, chair of the PHA UK. Parents donated £1 per sponge to the PHA UK and the pair took the battering in style.

Away from the activity programme, families were able to explore and enjoy the leisure facilities and beautiful grounds of Heythrop Park. And, of course, there were plenty of opportunities to snap selfies with cut-outs of The Green Leaf Crew.

Speaking at the event, Lorna Gravenstede, whose seven-year-old daughter Emily has PH, said: “We really looked forward to this weekend. It’s been so useful to meet other families, and other parents of children with PH. In the last six to 12 months Emily has become more aware that she has this condition, and has been really keen to meet other children with PH. She’s met six or seven so far in the last day, and I’m sure we’ll meet more.”

Kevin, whose ten-year-old daughter Holly has PH, added: “It’s been a superb weekend. It’s given all the kids chance to meet and play with each other so they know they are not the only ones out there (with PH). As well as the food and the place itself, the highlight for me has definitely been meeting different people.”

Click here to watch a special film of the day



Last medically reviewed: May, 2018 • May, 2021