Parents use IVF in a desperate attempt to create perfect genetic match so three-year-old son who suffers from a potentially fatal condition can have lifesaving bone marrow transplant
- WARNING: Story contains images readers may find emotionally distressing
- A toddler boy was diagnosed with Wiskott-Aldrich syndrome at three weeks old
- Fletcher Densley, from Melbourne, needs a lifesaving bone marrow transplant
- The only hope for a cure is the transfusion but he has been unable to find a match
- His parents have ?turned to IVF to make a match their son needs to stay alive
- Spent $140k on IVF - but have not found?an embryo with identical tissue match
Fletcher Densley was diagnosed with Wiskott-Aldrich syndrome at three weeks old
The parents of a three-year-old boy suffering from a potentially fatal condition are trying to conceive a child via IVF in a desperate attempt to save his life.
Little Fletcher Densley, from Melbourne, has been on the global donor registry since he was?diagnosed with Wiskott-Aldrich syndrome at just three weeks old.
The extremely rare genetic condition means a small bump on the head can cause severe bleeding beneath the skin or a common cold can kill him.
The only hope for a cure is a lifesaving bone marrow transplant - but his family have been unable to find a tissue match for the toddler.
Parents?Olivia, 39, and Andrew, 49, have turned to IVF using a special method of genetic testing?to make the perfect match their son needs to stay alive.
Speaking to Daily Mail Australia, the mother-of-five revealed the family have already spent $140,000 on several rounds of IVF - but little Fletcher is no closer to his match.
Mother-of-four Olivia (pictured with little Fletcher) has been undergoing IVF in a desperate attempt to conceive a child to save her son's life
The boy (celebrating his third birthday) has been on the global donor registry since diagnosis
'We've used all our lifesaving. We were planning to buy a house but to us, it's not a big deal. Buying a house verses losing a child is a no-brainer for us,' she said.
'We didn't want money to be the reason to stop us from trying to get a donor.
'Fletcher has been on the world donor list but no one matches him. So IVF has been our backup plan. We're not prepared to stop because of money.
'When it comes to your child, you're prepared to do anything.'
At 39 years old, having a baby at an 'advanced maternal age' has been difficult for Olivia as fertility levels usually plummet in a woman's mid-to-late 30s and early 40s.
After undergoing three rounds of IVF, the pair managed to create three embryos for testing, but none of them were a match.
The pair did another four rounds back to back and only got one embryo. However, the embryo did not have an identical tissue match.
The extremely rare genetic condition means little Fletcher bleeds and bruises easily
Happy family: Fletcher (second from left) posing for the camera next to his father Andrew and his four siblings and mother Olivia
Family and friends have set up a GoFundMe page to help the couple afford further IVF treatments in a last-ditch attempt to save their son's life
As his condition deteriorates, his parents have been monitoring Fletcher's every movement because the slightest bump or a cold could potentially kill him.
'His platelets are really low, so his body struggles with the bleeding. He gets blood oozing from his mouth, nose and ears,' Olivia said.
'If he was to hit his head, he can bleed internally. I'm always watching him when he's playing. He's a toddler, so he's always playing rough and hard like a typical boy.
'He also gets severe eczema. The main symptom he faces is immune deficiency so he has been hospitalised a couple of times now.
'He gets really bad infections so his body struggles to fight. He bruises and bleeds quite easily. He really struggles from bleeding.'
Far from getting better, Fletcher has been suffering from severe bleeding - to an extend he would be covered in blood.
As his condition deteriorates, his parents have been monitoring Fletcher's every movement
Olivia said it's 'heartbreaking' watching her son's health deteriorate as they desperately hope for a bone marrow donation to come through
When winter comes around, the family ensure Fletcher is all rugged up.
'The things we worry about, especially during winter time because there's a lot of coughs and cold coming into contact, which can be really dangerous for him.
'His immune system has slowly failed overtime. People can get over a cough in a week but his head colds have lasted more than a month - he can't shake them.
'Quite often, he would go on extra medication, so it gives his body a helping hand to get over these things.'
And Fletcher's debilitating condition has been all too familiar for the family after their older son Cooper, now aged seven, also had the same diagnosis.
However, Cooper was able to undergo a successful bone marrow transfusion from his young brother Jackson three years ago.
His mother said Fletcher 'isn't a great sleeper' because his eczema keeps him up so he feels irritable during day and night
When winter comes around, the family ensure Fletcher is all rugged up and away from germs
Fletcher?has been on the global donor registry since he was diagnosed at just three weeks old
The mother revealed her heartbreak of watching her son suffer through pain
'Cooper is doing really well. His immune system is pretty much cured from the transplant. His bruising and bleeding is ongoing but he's manageable now,' she said.?
Olivia said it's 'heartbreaking' watching her son's health deteriorate as they desperately hope for a bone marrow donation to come through.
'The transfusion is the only cure for him but we don't have a donor waiting. This is it, we need a bone marrow transfusion. He's so sick. It's heart-wrenching trying to save my son. It's really hard to watch,' she said.
Fletcher has been unable to go to shopping centres or play without supervision.
'We watch him all the time,' Olivia said.
'If he's on the trampoline, or going on the swings or slides, he can't do it without supervision. If he falls and hits his head, he would get internal bleeding.
'It's really serious so he's supervised at all times. We trying and let him be the typical three-year-old because he loves to run and play.
Despite the difficulties coping with the condition, Olivia said all she wants for her son is for him to lead a normal life like any other toddler
'I'm always two metres away ready to catch him and keep others off him in case it gets too rough for him.
'We let him go to playgroups or playgrounds but he doesn't go to shopping centres where there's large numbers of people and loads of germs flying around. We limit where we take him.
'He's not a great sleeper either. Eczema keeps him up so he feels irritable during day and night. If his blood runs down from his nose, it interrupts his sleep.
'So we do spend a lot of time at night trying to get him comfortable to sleep.'
But despite the difficulties coping with the condition, Olivia said all she wants for her son is for him to lead a normal life like any other toddler.
'We don't want him to miss out on the normal life,' she said.
'We shield him as much as we can, especially during winter. But let's say if we're going to visit family or friends, we call ahead to make sure no one is sick.
'If they say they're sick, we don't go obviously because our number one priority is to keep Fletcher well.'
For now, the family are hoping a bone marrow transplant will cure Fletcher of his condition
For now, the family are hoping?a bone marrow transplant will cure Fletcher of his potentially fatal condition.
'We don't want him to miss out on life,' Olivia said.
'We want to experience the good times and not shield him from everything. We try to find a delicate balance so we can enjoy him and he can enjoy his life.
'It's tough but we keep him safe and well as much as possible at the same time. We want to create happy memories with Fletcher.'
Family and friends have set up a GoFundMe page to help the couple afford further IVF treatments in a last-ditch attempt to save their son's life.
'At the moment, we only have two options left - the registry and IVF,' Olivia said.
'It's heartbreaking. It's really hard as a parent because we know without this transplant, it's fatal. Children with the condition don't live past their teenage years.'
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