How GoPI3Ks have helped those living with PROS &/or their families
2018
Our first ever grant was made in 2018 & this was to help one of our members with getting a pair of bespoke trousers made. We were happy to be able to help with this as we know how difficult it can be to find clothes that fit & those that don’t, to have them professionally tailored to suit can be pretty expensive.
We were also able to help one of our members with purchasing footwear, shoes & socks from the USA as they are unable to get the size they need in the UK to fit their overgrowth.
In February we were contacted by our member Margaret who had been struggling with her old electric wheelchair that wasn’t working well at all. We were happy to be able to supply her with a brand new electric wheelchair, Margaret was happy for us to share photos of her using her new chair
2020
In March we were able to help a family in America with the cost of their daughters’ dental care, something their insurance wasn’t able to cover.
“My family and I would like to give GOPI3KS a heartfelt “Thank you!” for donating money towards our daughter’s orthodontic bill. With your help, we are thrilled to announce, that her bill will be paid in full by this time next month! This is a huge weight off our shoulders! It really means a lot to us. Thank you so much!”
In May we had the pleasure of being able to help one of our families who had recently bought a dog.
Pugsley is to become an assistance dog to help their daughter who lives with PROS.
Initially we were able to help with the vaccinations for Pugsley before he started out on his training to become a therapy dog.
In June we were also able to help Pugsley with the start of his training to become a therapy / assistance dog to help one of our young GoPI3Ks members.
Here is Pugsley as he starts his training to become helpful to his little human owner.
In August we were able to help one of our members who needed to purchase two pairs of trousers from America that are bigger in size.
Subsequently we were then able to help with the payment to alter the 2 pairs to be made in to one pair of trousers to accommodate the overgrowth in his low limbs.
In August one of our younger members underwent an operation, but due to Covid-19 the family were only allowed to travel by car to the hospital.
This meant facing the cost of parking as well as congestion charges. GoPI3Ks was able to help with these.
In October we were contacted by Meggie’s mum as Meg had recently undergone an operation on her leg. This meant a long road of recovery ahead of her with no guarantee she would still be able to dance.
GoPI3Ks were able to help by paying for specialised physio & so far Meg is definitely on the road to making a full recovery.
We asked Meggie why she loves dancing so much:
“I love dancing because you can express yourself in a way that everyone will understand without using any words. I can lose myself and just enjoy the feeling of freedom. All your problems go away, it’s just you and dancing”.
2021
In May 2021 we received an application to help one of our members who had to take her little boy to a London hospital for some tests. However, this can prove very expensive with the cost of petrol and
the congestion charge. So GoPI3Ks were happy to help with this for the family.
In July we were contacted by Jess who was really struggling to safely ride her horse Blue
Being born with several rare conditions has made life challenging in more ways than one, my life has been full of ups and downs with over 300 hospital admissions and surgeries which is still on going. I’ve always had a passion for horses, at the age of 39 my mum and dad purchased my first horse for me, he was a rescue and was still a stallion, but the bond between us was there, now gelded and with all the hard work we’ve put in, we are definitely a fantastic duo, Being disabled, funds are tight, I’m lucky to have a wonderful yard owner and husband who helps on the day to day upkeep, however saddles have been a bit of an issue, due to (PROS) Pik3ca related overgrowth spectrum my balance and leg stability in a saddle wasn’t great. I’d heard of chunky monkey Saddles who specialised in para riding saddles but unfortunately it was way out of my budget. I approached the GoPI3Ks charity and asked for their help. My application was awarded and after a consultation with Sam at Chunky Monkey she knew exactly what I wanted and needed.
2022
As the cost of living rises we were happy that we were able to help one of our families by giving them a grant for £1,000 to help with their energy bills.
One of our families had their holiday cancelled due to Covid. They received a voucher to book another trip, but this wasn’t enough to cover a “once in a
lifetime” holiday. So GoPI3Ks were happy to pay the £597 that they needed to secure their holiday.
We were also able to pay for £392 for accommodation for one of our younger PROS members, so she could take part in a short documentary focusing on how disabled people are represented & treated in todays’ society. This also gave her a chance to spend time with other young people with rare conditions, helping her to feel more included & accepted.
Meg said “I feel so lucky to have had this experience, it was a total dream come true! It was so lovely to meet other people with different conditions and to celebrate it and create awareness. I made some friends for life and found a huge love for acting and film. Thank you for making this
possible for me!”
We were able to also help one of our younger PROS members. With overgrowth of the lower limbs & feet, it can mean that families need to buy 2 pairs of shoes/trainers to fit comfortably. We were more than happy to help
As winter sets in & energy prices rise, we don’t want anyone to struggle. So we were able to help one of our families to keep their home warm during this
winter with a grant of £800
2023
Just before the end of last year we were able to helpout one of our adult members with their heating bill by giving a grant of £1,000
In early 2023 we helped out one of our members with the cost of accommodation during a hospital visit to London
We were also able to help one of our younger members who needs to use equipment to help them breath & a newer more lightweight version was needed.
The young member wrote this for us: “Having this small sized suction machine helps with a lot of things other than being more active. Because its lighter we can go on longer walks and bike rides therefore I am more active, and we can see and do more things on holiday. It also helps with my parents’ backs and will help when I learn to suction myself when I am older and carry it myself without the help of my parents. Without the teams help we wouldn’t have been able to have the smaller LSU. So, thanks to them we have been able to have the LSU and can be more active and will help when I’m older. “=)
We were able to also help one of our younger PROS
members. With overgrowth of thelower limbs & feet, it can mean that families need to buy 2 pairs of shoes/trainers to fit comfortably. So we were able to help with trainers & shoes for school & everyday wear.
As we hosted the family weekend this year, we were able to help some of our families that would have struggled financially to attend the event. Providing them with overnight stays, travel and food expenses.
We also held a family weekend where those who attended where able to meet other parents/carers, children & adults living with PROS.
As well as listen to those within the medical field talk about PROS, recent research & current drug trial information. To read more about this please see our Family Weekend page: Family Weekends