Penny's Story

Meet Penny, 19, who loves animals, the sound of birds, rainmakers, shiny glittery moving things, and whose favourite new phrase is “Oh dear!”.

Penny’s mum Clare explains “Penny was a very sweet, cuddly, gentle baby. An MRI at 12 months old showed changes in her brain and I was told she would need support throughout her life. At 5 years old, we found out Penny has a rare chromosome deletion. She started to have seizures at 7 years old which affected her eating and drinking so she had a gastrostomy and receives nutrition through a tube directly to her stomach. She also has scoliosis, a visual impairment and obstructive sleep apnea".

"Life was not easy – I felt like everything was being thrown at me. I was devastated. Then we got to know Rose Road."

"Penny has been using Rose Road’s overnight respite service for 10 years now and she loves going. She knows she will enjoy their yummy food, the sensory toys, have a lovely bath and a pamper. Also, she loves to be around all the hustle and bustle, the bubbly friendly staff and her peers. Penny has become more confident and she always looks content and refreshed when she comes home".

"When Penny is at Rose Road it allows me to take her older brother for days out. He has additional needs, so Rose Road’s support means I can spoil him and give him all my attention. He is the best brother to Penny, he’s very protective and she loves to be around him”.

At Rose Road we are seeing an increasing number of young people like Penny who need support simply to eat, sleep, breathe and stay healthy and comfortable, and whose medical needs change often and increase with time too.

Penny recently started needing a CPAP machine overnight to help keep her airways open, which often needs to be reset throughout the night. Her medications have also increased and need to be administered throughout the day.

Clare continues, “I usually have to update Rose Road before each stay with changes and we discuss Penny’s needs regularly. It’s a full time job making sure Penny has all her equipment serviced or updated, and her medications, feeds and needs covered. But she takes everything in her stride and adapts so calmly, and usually with a sweet smile like she knows it will help. Penny has a calming effect on me and others she meets. She can have very giggly days and you can’t help giggling and smiling too! It’s infectious!"

It is such a relief to know she is so safe and well looked after at Rose Road. I also get a good night’s sleep to rejuvenate and I can totally relax!”

Jen Bailey, an Assistant Manager in Respite says “We’ve been able to take the time to get to know Penny’s individual needs and are rewarded with lots of eye contact and a giggly, happy-go-lucky personality. She’s more awake more often and meaningfully engaged with activities, and will even occasionally eat food orally which helps her have a better sense of fullness. She’s really flourished”.

Our Big Give Christmas Challenge

As we support more young people like Penny, we need to be able to take the time to understand their increasingly complex and individual needs, and work with them and their family to develop personally tailored care plans that meet the needs of the whole family.

The money you help us to raise during the Big Give Christmas Challenge will give our care teams greater capacity to spend time with each young person we support, and adapt our care as their needs change.

Please donate this week when your donation will be matched, doubling the impact of your gift this Christmas. Thank you.