Ivy Rose Smith, four, who is originally from Saltburn, and now living in Redcar, was diagnosed with life limiting condition, Leigh Syndrome, on April 15 2025.
The condition is a rare and severe genetic neurodegenerative disorder that mainly affects infants, causing rapid loss of motor and cognitive skills, breathing problems and muscle weakness.
Life expectancy is often limited to three to five years.
Ivy Rose Smith, four, from Saltburn was diagnosed with rare Leighs syndrome last year (Image: FAMILY)
Ivy, who is well known in the Saltburn area, has recently moved with her family to Redcar so they could find a home better suited to her needs.
Her grandmother, Suzanne Dickinson, 59, said the anniversary of Ivy’s diagnosis was particularly difficult and inspired the family to focus on making the most of their time together.
And so, she set up a post on a Facebook page dedicated to sharing Ivy’s story with a bucket list of things she has always wanted to do- and within 24 hours, all were organised for the family, meaning they have a busy year of memory making ahead.
Ivy and her nana Suzanne (Image: FAMILY)
Ivy lives with her mum, Melissa Smith, 39, and dad Patrick Smith, and has a 17-year-old brother, Oliver Smith.
The family say they are focused on making the most of every moment together that they have left with Ivy while also raising awareness of the condition.
Ivy and her mum Melissa (Image: FAMILY)
Speaking on behalf of the family, her nana, Suzanne Dickinson, said: “She was born healthy and normal, and we had no worries.
“It wasn’t until around the year and a half mark that we realised she wasn’t hitting milestones as she was expected to be doing.
“She was then unwell with covid and lost some of the skills she did have, such as standing and taking a few steps, and she went back to crawling, and that’s when more tests were arranged.
“We had to wait a while for results to come back, but we were aware at this point of mitochondrial conditions and were hoping for the best case scenario for Ivy.”
Ivy Rose Smith, four, from Saltburn was diagnosed with rare Leighs syndrome last year (Image: FAMILY)
“Unfortunately, we found out that she had Leighs which is one of the worst ones, and we were all just devastated for her.
“But she is such a little fighter and just so determined to do everything herself, she doesn’t let it stop her.
“She now has an NG tube fitted to feed her so she has gained some weight and strength and is currently able to use her walker.”
From top to bottom Aunty Sophie, Aunty Emily, mum Melissa, nana Suzanne and Ivy (Image: FAMILY)
Suzanne added: “The year anniversary of the diagnosis hit me hard, and that’s what made me think we just need to try and make as many memories as we can with Ivy, so she always has something to look forward to, to fulfil life as much as we can for her.
“She is an absolute blessing. People always stop and are drawn to her. She is adorable, strong willed and determined.
“When I posted her bucket list on Facebook, I wasn’t expecting really anything to come of it, just hoping people had contacts or mates rates for some things, as it is not cheap.”
The family on some of the adventures they have already completed with Ivy (Image: FAMILY)
“There will be a time that she is not with us, and I don’t want her life to just come and go. I want something lasting, and that’s why we are trying to fundraise and raise awareness for her.
“The bucket list has now all been arranged, so we have a lot planned, such as a motorhome holiday, Flamingo Land, CBeebies world, Lap land, she is even the mascot for the Middlesbrough last game of the season, which will be special.
“I can’t thank everyone who has shared her story or helped fulfil her bucket list enough. We are just so grateful for the opportunities to give us more memories with Ivy.”
The family on some of the adventures they have already completed with Ivy (Image: FAMILY)
Ivy Rose Smith, four, from Saltburn was diagnosed with rare Leighs syndrome last year (Image: FAMILY)
The family on some of the adventures they have already completed with Ivy (Image: FAMILY)
Leigh syndrome is a rare genetic condition that mainly affects the nervous system. Symptoms usually appear in infancy or early childhood.
Common symptoms include:
- Loss of previously learned skills such as sitting, walking or talking
- Weak muscles and poor movement control
- Breathing problems
- Difficulty feeding or swallowing
- Poor growth or weight gain
- Seizures
- Vision or hearing problems
- Extreme tiredness or low energy
These symptoms occur because the condition affects the body’s mitochondria, which produce energy for cells, particularly in the brain and muscles.
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