Ever since little Monica McDermott went into cardiac arrest at home at just three days old, her parents, Emma and Michael, have stayed at Ronald McDonald House, based at Royal Manchester Children’s Hospital.
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The seven-month-old is currently under the care of the hospital with kidney and liver failure but her condition is not yet diagnosed.
As she is not yet able to return home, Emma has not left her bedside, with Michael, 30, living at their Preston home with their two other children, Sean, 10 and Megan, five.
The couple cannot praise the staff enough as they receive constant support from the team and are aiming to raise £5,000 to sponsor a room in Monica’s name.
Emma, 28, said: “It is a mystery as to why she is still so poorly but she has overcome so much and I know she will keep fighting.
“She was sent home by Royal Preston Hospital the day after she was born but when she was three days old, she was throwing up her bowel movements at home.
“This led to Monica’s heart stopping and she needed CPR in the ambulance. She was rushed to Manchester Children’s Hospital and we found out she had an imperforate anus.
“She has been here in the intensive care unit since then.
“Since coming into the hospital she has suffered from kidney and liver failure and is still on the ventilator.
“She has had two operations, one to fit a stoma bag and another to fit peritoneal dialysis.
“We have been told on three occasions she wouldn’t survive.
“We had to get her christened at four weeks old as she had really bad sepsis but she has pulled through.
“She is on a tracheostomy 24 hours a day and she is feeding continuously but she can’t have bottles in her mouth.
“She has difficulty putting weight on and she is only 9lb 2oz.
“She is on different medication for her kidneys, as she has difficulty in going for a wee.
“We don’t know whether the imperforate anus has caused the kidney problems.
“She was able to wee the few days she was home with us.
“We hope she can have a kidney transplant when she is two or three.
“Her development has delayed but doctors in the neurology department don’t think her brain is affected. She will walk and talk but it may take longer.
“Monica is very happy. She is not able to go outside yet but I am having tracheostomy training so I hope one day soon we can take her out.
“She has only just started to go out into the ward to play with her brother and sister in the play room.
“It has been very hard.
“We only had Monica home for two days before she fell ill.
“I have two other children, and they are coping well. Michael has gone back to work at Preslec, in Preston and the children have a normal routine.
“They travel to Manchester every weekend to be with Monica.
“But with being at the hospital every day, I have missed Megan’s first year at school.
“During the summer school holidays the children will come here and hopefully I can take Monica out so we can do things with them.”
Emma, a former care worker, adds Monica is likely to remain at Ronald McDonald until December and she needs to adapt her rented Community Gateway home for Monica’s needs.
She is in talks with Preston City Council to move to a more suitable property in the Holme Slack area.
She adds: “We hope to get somewhere with two rooms downstairs in Holme Slack, near Sean and Megan’s school.
“An occupational therapist has been to the house and we can change the living room into Monica’s bedroom, but that is not ideal for long as we have no family room.”
To thank staff at Ronald McDonald for their support, Emma is co-ordinating a host of fundraising activities for the charity.
A family friend, Ryan Harwood, is taking part in a boxing match at Preston’s Guild Hall on May 12; Monica’s aunt, Michelle Turner is holding a fun day at Longridge Conservative Club on May 19 from 1pm and she is also doing a skydive in June.
To celebrate Monica’s first birthday, the family is holding a fundraiser at Greenlands Labour Club in Preston, on September 21 from noon until 3pm.
She says: “I have been staying there without charge since last October and it is likely I will be here until at least December.
“We only had to pay £25 donation and I can stay here for as long as needed.
“Ronald McDonald House has 60 rooms and it costs the charity £25 a day per family.
“The staff have ensured we have Christmas presents, Easter eggs and Mother’s Day gifts.
“They are amazing and make us feel special so I want to give something back.”
l To make a donation visit http://www.justgiving.com/fundraising/emma-mcdermott8