A Midlothian mum is appealing to the public to try to raise funds so that she can make her home accessible for her warrior daughter Chloe.
The mother of three, Mechelle O’Hara, along with dad Scott Thomson, have begrudgingly set up their fundraiser as they see no other option than to try to raise money to build an extension for their three-year-old girl which will accommodate her needs at their Bilston home.
Chloe was born 12 weeks premature at the end of September 2019 and in her first few days she developed meningitis as well as sepsis. After another 11 days she deteriorated further and it was discovered that she had a cyst filled with fluid that was blocking her airways.
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This led to her left lung being overinflated which caused air to become trapped, creating pressure on both her heart and her right lung. She required surgery to fix the issue but was too small for this as she weighed only three pounds.
She was eventually transferred from Edinburgh to a hospital in Glasgow where health professionals used a laser to drain the fluid from the cyst. This only worked for two weeks before the procedure had to be carried out again.
When she was eight weeks old she was big enough for the original surgery and had open surgery where heart and lung bypasses were carried out. Surgeons could only remove so much of the cyst as it was attached to her actual airway and complete removal could have ended her life.
After her surgeries Chloe had to be put on full life support and her parents were informed that she would need reconstructive surgery on her lungs. An MRI was also carried out and it was found that she had suffered from severe brain damage.
From there she was transferred back to Edinburgh and plans were put into place for end of life care on December 15 2019 as they expected the brain damage to be fatal. However, the small warrior pulled through and is still here today.
“I don't think I stopped crying for days, it was just awful.” Mechelle said.
“The whole uncertainty was so difficult. They were telling you the worst thing you can hear as a parent and saying there was a good chance you will never take her home and if you do she will be severely disabled.
“You cannot picture it and at the time it felt like our life was over. I can still remember every word of the conversation and every anniversary of that day I remember it so vividly.
“After a few weeks at the Simpsons we were sent to the Sick Kids and that is where things began to feel positive. They were confident we would get to take her home but I stopped having expectations until it actually happened.
“I did not tell anyone until we got her home as I didn't think she would make it. But on March 15 2020 we got her home and a week later we went into lockdown, it was such a strange time.
“None of us believed it would happen until it finally did. I kept expecting someone to stop us taking her out the door and say she cannot leave.”
Fast forward to today and Chloe is three and a half years old. She relies on her mother to be her carer as she cannot hold up her head and cannot move, feed or drink independently, suffers from visual impairments and has lots of seizures with regular pain.
She also has to live with the most severe form of cerebral palsy impacting her whole body. The courageous young girl has no independent mobility and a low muscle tone, meaning she is unable to support herself.
She therefore has to be carried everywhere in the house. The family uses a standing frame to help her stand upright as well as a big supportive postural seat with other mechanisms - this means their living room is kitted out with various pieces of equipment to make life easier.
Further issues have arisen as Chloe has become older. In the past her mum would be able to bathe her but now she has become too heavy causing back problems for Mechelle when it comes to cleaning her daughter.
At the moment they rely on a special bath seat and use a shower head but Mechelle says that this is not ideal. Her bedroom and bathroom are currently upstairs which is impractical.
As a result the family have decided to organise a GoFundMe to raise money to go towards an extension that will allow for a specialist bedroom and adjacent washroom with a hoist.
Mechelle added: “We need a bedroom and wet room bathroom with a special hoist as she gets older. Unfortunately our home will need an extension for us to be able to do this.
“Midlothian council have done assessments and said they will fund the wetroom and a hoist but we will need money for the extension. Unfortunately we have to pay for everything up front and claim it back at a later date from the council.
“I am a full time carer so it is difficult to fund all of this on one wage. We held off fundraising in the past as we felt horrible about it.
“It feels as though you are begging for it and we really want to be able to provide for her ourselves but we just can’t. £10,000 is our starting limit but it will obviously cost so much more however we do not want to be cheeky.
“Hopefully we can raise that and see where it takes us.”
Mechelle and Scott are also parents to Chloe’s two siblings - Amy 12 and Robbie 10.
You can support their GoFundMe here.
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