“I wish to have a princess bedroom makeover”
4 years old, Dyfed
For the first 18 months of Tiara’s life, everything was ‘normal’, until April 2018 when her parents realised her heart rate was extremely fast. A visit to the doctors led to Tiara being referred to the hospital for a scan to look at her heart. That’s when her family was told: “There was a big problem.” Tiara’s heart was beginning to fail and she was diagnosed with Marfan syndrome.
Marfan syndrome causes Tiara’s body to stretch and grow abnormally, resulting in weak heart valves that leak. She’s also very tall and thin, and very short sighted.
"The news was so hard to take. They can’t give any time frames for Tiara’s life."
Tiara has nurses looking after her as she’s on palliative care and her Paediatric Advance Care plan means that her school, the police, and family all have a document that says if anything goes wrong with her heart, no treatment is given. Unfortunately, Tiara cannot have a heart transplant as the risk is too high.
For the past year, Tiara has mostly been shielding at home with her family. This has given them time to enjoy Tiara’s favourite things: Disney and princesses. Dressing up in her collection of princess outfits and playing with her sister meant her wish for a princess bedroom makeover was the perfect way for her to enjoy these things in her own special space.
Currently, Tiara’s whole family sleep in one bedroom to ensure her safety, but Jon explained: “A bedroom would be a perfect option as it will be for Tiara; her own design, and she will have it for the rest of her time with us.”
So Wishgranter Debbie got to work, with the help of our fantastic bedroom makeover partner specialist, Talya from Kinderoo. Talya helped Tiara design her perfect bedroom by sending her pictures and mood boards to capture her wish - no lockdown stopped this creativity! After two and half days of hard work, the special transformation was complete and Tiara now has her own bespoke bedroom to enjoy.
How Tiara's wish helped
Dad Jon recalled: “At the end of the day, they opened the door and showed her the room and I think she was overwhelmed as it hadn’t sunk in it was her room. Tiara used to be very frightened of hospitals, but she isn’t anymore - she knows where the toy rooms are in each hospital. Now, it’s almost like that – her room looks like one of the toy rooms!"
"She spends most of her time there. The biggest difference is now she can play in there as well as sleep as there’s more room for her toys. She commented on how soft the floor was as we have laminate throughout the rest of the house. Just this morning, she and her sister were playing in her room together before they came down."
Tiara’s wish is the start of something new for the whole family. Not only will it give Tiara her own space in which to relax, play and rest, but Tiara’s family will have more space too, whilst all still feeling safe and comforted.
“It’s a very big change not having Tiara sleeping with us. We chose a small double bed for the new room so that her mum can still sleep with her when needed.”
Jon reflected: “Looking back now on the other wishes that Tiara chose, those would have lasted a few days, but the bedroom gives us more. Every day we get something from it.”
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