Michelle and Jake from Bugle, Cornwall, have 2 beautiful daughters, Kensa and Wyllow.
During Michelle’s pregnancy with Kensa, there were no signs of anything abnormal.
Kensa entered the world on the couple’s 1st wedding anniversary, but it wasn’t until Kensa was 6 months old that they noticed things weren’t quite right with their daughter.
She wasn’t holding her head, she had no upper body control and her ribs would tuck in when she was breathing.
Michelle went back and forth to the GP 3 times with Kensa. When she was eventually seen she was sent straight to Treliske hospital.
Doctor’s suspected Kensa may have a neurological condition, so an ultrasound and MRI were carried out.
Shortly after, a doctor came to visit the family in their home, and they were told Kensa had a very rare brain malformation called Polymicrogyria. There wasn’t a lot of information about the condition, and a specialist in Newcastle was contacted to find out how it was going to affect Kensa.
Kensa has an excessive number of small folds on the surface of her brain. She is non-verbal and a full-time wheelchair user, she needs 24- hour care and she had her first seizure 3 months before her 5th birthday.
In 2019, the family had a home visit from some of the team from Little Harbour to ascertain whether Kensa met the right criteria to receive support from the hospice.
Michelle said: “Luckily for us, well not luckily, but you know what I mean, she met the criteria. We had our 1st stay at the beginning of March 2020, and we were blown away. Kensa loved it.
I simply can’t fault Little Harbour; everyone is lovely and always at the end of the phone. I’m working towards leaving her on her own overnight, I’m just really bad at letting go!
Kensa has a 5-year-old younger sister called Wyllow. Wyllow adores coming to Little Harbour and gets very excited when she finds out the family have a visit.
Michelle said: “One of my favourite things is seeing the excitement on Wyllow’s face. We don’t tell her we’re going to Little Harbour until the day before. We tell her she has a surprise tomorrow and she says, ‘is it the holiday house?’ as that is what she calls the hospice.”
Wyllow idolises the Sibling Support Team and loves spending time with Suzanne and Heather. She will send them things in the post and will even decorate the envelopes.
“I have to take them to the post office all decorated and covered in stickers!” Michelle said.
Wyllow has made plenty of friends at the hospice and loves soaking everything up.
Michelle said: “In the car on the way down she’ll say, ‘do you think the jacuzzi is open? I wonder what room Kensa is going to be in?’ She makes a full plan for the stay and says ‘right Mummy, we’re going to do this, this and this.’
“I honestly don’t know what we’d do without the hospice”, Michelle continued.
When Michelle’s brother-in-law sadly died the hospice even stepped in and had Kensa at Little Harbour for a day visit so Michelle could attend at the funeral as it was on a school day.
Michelle said: “We’re so bad at asking for help. Our community nurse always tells us, ‘You need to ask for help’. Because Jake and I both work, we have that ‘let’s just get on with it’ mentality, and it isn’t until someone asks you if you’re alright, then I just crumble and start crying.”
Michelle and Jake are so grateful for the support network they have around them when it comes to their daughter. Michelle’s sister is trained to feed and give Kensa her medication, and they have various people who will come and sit with Kensa while they do the school run for Wyllow.
The joy when staying at the hospice is that they don’t have to worry about anything; the cooking and cleaning is all taken care of so they can just enjoy family time together.
Michelle said: “We will leave to go home on the Sunday, and Wyllow will ask when we’re going again. She is always talking about it, she loves seeing everyone and the whole experience. Once she knows we’re going, the anticipation takes over.
Kensa’s favourite things at Little Harbour are the sensory room and the Music Therapy. She loves anything that makes a mess, and if anyone falls over, that is the highlight of her stay. She finds joy in things that go wrong. She will laugh hysterically.
“It’s lovely when we bump into staff or other families from Little Harbour out and about, everyone always stops to talk to you and ask how the girls are.”
But Michelle never quite knows what is around the corner for Kensa; last Christmas, Kensa was very poorly. She had to have a double hip reconstruction, where both her femurs were re-positioned. Kensa was in theatre for 8.5 hours. 3 days later, both her lungs collapsed and she was blue lighted from Derriford to Bristol, where she was on a ventilator for 2 weeks.
The Care Team at Little Harbour called to see how Kensa was, and Michelle had to reveal they were in intensive care. Once the hospice was aware, they arranged for colleagues from Charlton Farm to visit the family in ICU. The family had regular phone calls from the team to make sure they weren’t alone.
The family spent Christmas Day in the Wallace and Gromit accommodation and were able to open presents. They then went to Derriford on New Year’s Eve. Wyllow was away from her parents and sister staying with her auntie for 3 weeks and Michelle and Jake had to take turns visiting Wyllow just for the day.
Michelle said: “It was Kensa’s first time on ICU; it was all new to us. Families aren’t allowed to stay on that ward, so we wanted Wyllow to have a proper Christmas with family. Now when she goes for sleepovers with Auntie Katie, we tell her its only for 1 night, and not 23!”
When Kensa came home, she wasn’t fully weaned off the medication from ICU and suffered with hallucinations. It was at this time that Little Harbour invited the family for a resilience stay.
Michelle said: “That was really helpful, they really do everything they can to get you in and give you support.
The future is uncertain for Kensa, but Michelle feels so grateful to have the support of the hospice.
“You just don’t know with Kensa’s condition, some people go into adulthood, but others don’t. She’ll be entering puberty soon which will affect her seizures.
We’re making memories for when the time comes that Kensa isn’t here. We’ll always look at this place and be thankful for what you have all given us.