Ivy Lee and family looking forward to extra special Christmas Day
Our Children’s Hospital does all it can to bring the festive season into all of our wards and departments to make this time of year as special as it can be for all our patients and families.
For Ivy Lee and her family this Christmas Day will be extra special as, with the support of our clinical teams, Ivy Lee will spend some time in the family home in Dudley on Christmas Day.
The 18-month-old is one of our long-term patients, who has spent almost all her life being cared for by our teams on our Paediatric Intensive Care Unit (PICU) and our Ocean Ward.
Ivy Lee has a condition called Spinal muscular atrophy (SMA) Type 1. This is a rare genetic condition that can cause muscle weakness that gets worse over time. It’s means she can’t do the things other children might be able to do, like sitting unaided or walking.
Every month in the UK, four babies are born with SMA. SMA affects an estimated 1 in 14,000 UK births.
Ivy Lee has had four procedures, one surgery and several intubations during her nine months on our PICU ward.
Professor Rajat Gupta, Ivy Lee’s Neurology Consultant shared: “The journey so far for Ivy Lee and her parents has been a "rollercoaster" with highs and lows.
“There have been many challenges and difficult discussions. Georgia, Jordan and the whole family have remained courageous and have always worked with us with respect and dignity to do the best for Ivy Lee.
“Ivy Lee has shown some good improvements with treatment and is now stable enough to be discharged home in the near future.
“She is a beautiful child and has a fabulous personality. She is cheeky and has a radiant smile. It is evident that she is adored by her family and the hospital staff. She has recently been having days out with her family and enjoys these immensely.
Prof. Gupta added: “At our Children's Hospital we always endeavour to celebrate festivals and important events, such as Christmas, so that they are special occasions for our patients and their families to look forward to, particularly when they cannot be at home.
“I wish all our patients and their families a very happy festive season.”
Georgia, Ivy’s Mum, shared: “Ivy has been on a whirlwind of a journey from the unknown to coming out stronger than ever and proving a lot of people wrong. Proud is an understatement.”
“We are looking forward to Christmas so much as Ivy Lee gets to see more people. That is difficult in hospital because she’s in her own cubicle. I think how lovely it would be for her to be able to socialise with other children.
“We are looking forward to the future where we'll be able to go on holidays and do ‘normal’ things like visit other families and going to see Santa in his grotto.
“This year, we’re going to go all out and make it as special as we can for Ivy Lee and all of us.”
Lauren Burgess, Deputy Ward Manager for Ocean Ward at our Children’s hospital said: “Ivy has been on a really long journey. We are really happy that she is doing so well now and her parents are able to her home for a couple of days in the festive period and make memories.”
Mary Kelly is one of our hospital’s Family Support Workers who has supported Ivy-Lee, Georgia and Jordan.
She said: “We understand just how difficult it is being away from family and friends at any time, especially at Christmas.
“It is vital we try to make the festive season as happy an occasion as we can under the difficult circumstances. Many of the children can visit the grotto, see Santa and have gifts. It is important to make Christmas as magical as we can.”
Mary Pitham, Ward Manager for Ocean Ward, explained: “Ivy came over from our PICU to Ocean Ward in September this year. Throughout that time she has achieved so much. She can now make sounds and babble to express herself.
“It has been so lovely to see her grow and develop whilst making memories here with her family.”
We’ll keep you updated on Ivy-Lee’s special day on our social media channels over the festive period.