March 17, 2023

The Brave Boy, 2, Fᴏᴜɢʜᴛ Rare ɪʟʟɴᴇss To The End With A Smile

The Brave Boy, 2, Fᴏᴜɢʜᴛ Rare ɪʟʟɴᴇss To The End With A Smile

NO matter what little Axl Walker had to endure in his ᴛʀᴀɢɪᴄᴀʟʟʏ sʜᴏʀᴛ ʟɪfᴇ, he did it with a smile. Bʟᴏᴏᴅ ᴛʀᴀɴsFᴜsɪᴏɴs, ᴍᴇᴅɪᴄᴀʟ ᴘʀᴏᴄᴇᴅᴜʀᴇs ᴀɴᴅ ʙᴏɴᴇ ᴍᴀʀʀᴏᴡ ᴛʀᴀɴsᴘʟᴀɴᴛs … he took them all in his stride.

“He was the most joyous child,Even when he was having tubes inserted into him, he would cry for a split second and then he’d be laughing. When he walked into a room, he got everyone’s attention.” said Axl’s mum, Claire

Axl was born with ᴄᴏɴɢᴇɴɪᴛᴀʟ ᴅʏsᴇʀʏᴛʜʀᴏᴘᴏɪᴇᴛɪᴄ ᴀɴᴀᴇᴍɪᴀ (CDA), ᴀ ᴠᴇʀʏ ʀᴀʀᴇ ʙʟᴏᴏᴅ ᴅɪsᴏʀᴅᴇʀ, which meant his body couldn’t make ʀᴇᴅ ʙʟᴏᴏᴅ ᴄᴇʟʟs.  He ᴅɪᴇᴅ just three days before his third birthday, on March 7, 2018. At their 20-week sᴄᴀɴ, Claire and Ian were told their baby was sᴜFFᴇʀɪɴɢ Fʀᴏᴍ ʜʏᴅʀᴏᴘs Fᴇᴛᴀʟɪs, ᴀ ᴘᴏᴛᴇɴᴛɪᴀʟʟʏ Fᴀᴛᴀʟ ᴄᴏɴᴅɪᴛɪᴏɴ in which body Fʟᴜɪᴅ ᴄᴀɴ ᴏᴠᴇʀᴡʜᴇʟᴍ ᴛʜᴇ ᴏʀɢᴀɴs.  Claire had to have weekly check-ups and Axl underwent four ʙʟᴏᴏᴅ ᴛʀᴀɴsFᴜsɪᴏɴs while still in the womb.

She said: “We were told by every specialist that we should ᴛᴇʀᴍɪɴᴀᴛᴇ because Axl had a one per cent chance of sᴜʀᴠɪᴠᴀʟ. Every Monday, we said, ‘If his heart’s still beating, then we will still Fɪɢʜᴛ for him.  I was even asked if I’d like a ᴘᴏsᴛ-ᴍᴏʀᴛᴇᴍ two hours before delivering him by Cᴀᴇsᴀʀᴇᴀɴ sᴇᴄᴛɪᴏɴ.”

Axl spent seven weeks in the neonatal ward at Bradford Royal Infirmary, but ᴛᴇsᴛs showed he was not producing ʀᴇᴅ ʙʟᴏᴏᴅ ᴄᴇʟʟs and he required monthly ʙʟᴏᴏᴅ ᴛʀᴀɴsFᴜsɪᴏɴs.

Claire, a healthcare assistant, said: “Because ᴛʜᴇ ᴄᴏɴᴅɪᴛɪᴏɴ ᴡᴇᴀᴋᴇɴᴇᴅ ʜɪs ɪᴍᴍᴜɴᴇ sʏsᴛᴇᴍ, we were in and out of hospital so often that first. For everything that he went through, he was the happiest child.”

Axl underwent his first ʙᴏɴᴇ ᴍᴀʀʀᴏᴡ ᴛʀᴀɴsᴘʟᴀɴᴛ, ᴅᴏɴᴀᴛᴇᴅ from his dad, shortly after he had turned two and spent five weeks in hospital.  ᴛᴇsᴛs showed though that the transplant wasn’t working and so the family then had to wait six months for an ᴀɴᴏɴʏᴍᴏᴜs ᴅᴏɴᴏʀ match. That sᴜʀɢᴇʀʏ was successful, but ᴄʜᴇᴍᴏᴛʜᴇʀᴀᴘʏ had ᴡᴇᴀᴋᴇɴᴇᴅ Axl’s body and he wasn’t able to Fɪɢʜᴛ ᴏFF ᴀ ᴄʜᴇsᴛ ɪɴFᴇᴄᴛɪᴏɴ.

Claire said: “He was in intensive care for three weeks.  There were ɢᴏᴏᴅ ᴀɴᴅ ʙᴀᴅ days. Sometimes there was a slight improvement, sometimes a dᴇᴛᴇʀɪᴏʀᴀᴛɪᴏɴ. Wᴇ ʀᴇFᴜsᴇᴅ ᴛᴏ sᴡɪᴛᴄʜ ᴏFF ʜɪs ʟɪFᴇ support because we could always see a little bit of hope.”

Keeping his memory alive. Last year, the family helped raise £12,000 through their annual Sparkle for Axl day, in which they ask people to wear something sparkly and donate money to buy toys, games and arts and crafts materials for young patients.

Claire said: “I was scared people would forget Axl. He made such a mark on everyone at Bradford so we wanted to do something to remember him.

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