Cathers' Story
Cathers is a creative, loving young woman who loves spending time with people. She has Down's Syndrome (Trisomy 21) and an inoperable heart defect. This is her story.
32 year old Catherine has been supported by Naomi House & Jacksplace for over 18 years. She has Down’s Syndrome (Trisomy 21) and an inoperable heart defect. Catherine loves to be with people and while her specialist care needs are being met at our hospices, she is able to socialise and have new experiences.
Catherine’s mum, Fiona, shares their story with us:
Catherine (she prefers to be called Cathers), has reached the age of 32, which is wonderful as we didn't expect her to get this far. She needs a lot of support, but she brings so much happiness and pleasure to everyone. She has been an inspiration to us and is adored by her family.
Cathers was born with atrioventricular septal defect, which means she has a big hole in her heart and we were told very early on that it was inoperable. As a result of this, Cathers also has Eisenmenger’s syndrome which is a life threatening condition, meaning that she has irregular blood flow in her heart and lungs.
When Cathers was 16 she was seriously ill with Mycoplasma pneumonia and was in hospital for four weeks. We didn't think she was going to recover, but miraculously she pulled through. Cathers needed to be on regular oxygen and so, with help from the community nurse, I learnt how to manage that and the SATS machine, which is a device used to measure oxygen levels in blood. It was at this point that both the community nurse and the paediatrician told us about Naomi House.
I was so pleased when Cathers was accepted at Naomi House. I felt the support straight away. It is such a lovely, happy place.
Cathers now stays independently away from me at Jacksplace, their service for young adults, and it is such a wonderful thing and a real support. It is just lovely that she has a special place to go where I know she will be well looked after and she will get additional medical intervention when she needs it.
I have the confidence in the staff and I know that Cathers is in very safe hands. She looks forward to her visits.
When Cathers comes to Jacksplace she mixes with lots of different people which she loves. She is a very sociable person and thrives when she is with others. She has extreme empathy for those around her and is highly sensitive to their moods, even though she might not be able to express her own more complex feelings. She knows when somebody needs a cuddle or if they are feeling down, she is highly emotionally aware. During COVID when she wasn’t able to mix with other people, it was detrimental to her. The activities team helped her by playing board games together online. It wasn’t the same as seeing people in person but it was something that helped keep her going.
Cathers loves music, singing and dancing and she particularly enjoys art and crafts. She can do some things herself but she needs a lot of help now. The team at Naomi House & Jacksplace will offer a range of activities and some she can manage by herself and with some she will have support hand over hand. She will be given options so that she can make her own choices.
Cooking at Jacksplace is a firm favourite with Cathers and she said she had a lovely time on one of her recent visits when she made pizzas. She also enjoys being outside in the fresh air doing gardening. At Jacksplace, the young adults are encouraged to make their own decisions and can then see the results of what they’ve created. They can see the pie that they’ve baked or the flower or onion that is growing.
Another of Cathers’ favourite activities is swimming in the hydrotherapy pool. It’s so good that I can go into the pool with her and it's lovely to see her enjoying herself so much. It's the only pool that Cathers can use as she can't go to public pools because they are too cold, too noisy and there is a greater risk of infection. Cathers’ cardiologist said that the hydrotherapy pool is especially good for people with pulmonary hypertension and swimming is the best form of exercise. It's fun to see her enjoying herself, with her arm bands and her woggle, swimming independently away from me, which is a very good thing. It's so lovely and warm, it’s gorgeous.
It makes such a difference to us that she can come to Jacksplace and have that special time with people who have got the right skills and can give her the specialist care that she needs.
Cathers likes to have independence from me but she can’t stay with friends as they are unable to cope with her medical needs. I won’t usually allow her to stay for a sleepover with anybody other than my family, however, I am happy for her to stay at Naomi House & Jacksplace. It doesn't feel like she’s going to a strange environment because it's like a second home to her.
The staff are lovely and what amazes me when you come here is that everyone is always so positive. It's a really happy atmosphere, which is just wonderful, and I think Cathers definitely thrives on that. They encourage people to be as independent as possible and give them the chance to make choices in the activities that they plan.
Naomi House & Jacksplace is a lifeline for us. It provides such amazing support to lots of families like mine and if things are difficult at home, I know I can call on them when I need help. To know that you've got a safe place and people who understand, means a lot.
I think Naomi House & Jacksplace have given Cathers an improved quality of life and when we talk about her visits, she lights up. It’s her special place where she can come and stay and we know that she's looked after. That's the most important thing for any mum.
Naomi House & Jacksplace is a very worthy cause. I think people can be quite frightened of hospices but when Cathers was referred here, I was so grateful for the support because I didn't know what was around the corner for us.
With Naomi House & Jacksplace and her lovely family, we're giving Cathers the quality of life that she deserves. She's a real character and we want her to enjoy every day. I don't look to the future, I live a day at a time, she’s taught us to do that. Cathers looks forward to her visits to Jacksplace and we feel very lucky that she's been able to come here.
