Alex was diagnosed when he was just three days old and has had two major open heart surgeries. To go outside, the three year-old from Leeds has to be carried and struggles to play on his own.
Mum, Kelly Moss, 36, said: “It’s been really hard and I’ve struggled to come to terms with it. Everyday I worry about him – when he’s at nursery, when he’s out of my sight, even in bed.
“I am constantly anxious and feel like I have PTSD from those first few days.”
Kelly gave birth to Alex and his twin brother William at 36 weeks in February 2018.
While William was fine, Alex stopped breathing as soon as he was born and had to be resuscitated. He was sent to an intensive care unit (ICU) because he was struggling to keep up his oxygen levels.
Three days after birth, doctors told Kelly Alex had hypoplastic left heart syndrome which affects the flow of blood through the vital organ due to the left side not fully forming.
The condition means Alex only has one half of his heart working properly.
Days after the diagnosis, Alex went through the first of two open heart surgeries as well as having extra-corporeal membrane oxygenation, which is when an artificial lung is used to pump oxygen around the body. The operation went well and the tot was able to go home.
Kelly told LeedsLive: “I had never even been in an ICU before and suddenly I could see his heart.
“Twice a year we celebrate the anniversary of each heart surgery because it’s a celebration of how far he’s come.”
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“Being told to take him home and enjoy him and that he’s not going to survive the night are every parent’s worst nightmare. William and Alex have a really special bond and it breaks my heart to think William may grow up without him.”
Alex requires a pump to help him eat because of problems with unsafe and delayed swallowing with trouble feeding a result of his vocal cords suffering from the amount of ventilation he has had.
He also had to have daily injections which were aimed at reducing the size of a blood clot on his heart but these were ended after 18 months because they did not work. The clot remains to this day.
The youngster, who has five siblings, endured a second open heart surgery while a third operation is due but delayed as Alex fights his second chest infection in five weeks.
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Kelly said: “It’s really worrying that he keeps getting them because the surgery really relies on his lungs and if he has a chest infection he might not be able to have this surgery that he really needs.
“It’s been horrendous for the older children because they’re constantly concerned about him and have asked me things like, ‘Is he going to die?'”
Alex is registered at Forget Me Not Children’s Hospice as some of his care is regarded as palliative with his low blood oxygen levels meaning that moving about indoors at home or at nursery often makes him blue and breathless – even when just playing with his toys.
His mobility is restricted as a result and he cannot use both hands at the same time. He also can’t go outside on his own without his wheelchair.
Kelly explained that the family loves to go on walks together, but that becomes more difficult as the ground gets muddier in winter, making it hard to use a wheelchair on anything but a flat pavement.
This is when Alex’s older brother, Josh, 16, comes to the resuce, carrying the youngster in a back carrier so he can join the family.
However, Kelly hopes to raise enough for a new all-terrain specialist pushchair so they can take Alex along with his feeding pump to woods, beaches and rivers
She said: “With this chair, we’d be able to go anywhere we wanted to and Alex wouldn’t be restricted.
“It would change our lives. It would mean the world for Alex to be comfortable and able to see and feel the outside properly. It would also give Josh the freedom to be a teenager.”
Donate to the GoFundMe for Alex’s pushchair here.