THEY CALL MY BABY A MINION
Logan Webb was diagnosed with Alagille syndrome, a genetic disorder that causes liver damage and bile to be absorbed by the body. His doting parents Gemma Channing, 25, and Lloyd Webb, 27, are reluctant to go out in public after cruel passers-by branded him a ‘Minion’, ‘Shrek’ and ‘the Grinch’ because of his yellow skin.
“It puts me off going out but I have no choice sometimes and there’s always a minimum of three people who make a comment,” Gemma tells New Idea.
“It is a daily reminder that my son is super ill and his future is unknown when strangers approach me in the street or supermarket.”
Strangers often give Gemma unsolicited advice about Logan’s condition, and some even accuse her of being a bad mother.
“People assume I am not caring for my son and tell me to take him to the hospital.
“Once a stranger didn’t understand his complex condition, so [she] took it upon herself to call the paramedics while I was food shopping,” Gemma recalls.
“The paramedic understood what we were saying but it was so embarrassing.”
While Gemma and Logan have more than enough to deal with, it’s the cruel nicknames that hurt the most.
“Other people laugh off his condition and compare him to all sorts, such as a Minion, the Grinch and even Shrek. It is absolutely heart-wrenching to hear – to me he is perfect,” Gemma says.
“Logan’s skin has been yellow since he was 4 weeks old, but I don’t see yellow any more, I just see my son.”
After a traumatic three-day labour, Logan was born on December 18, 2018, but he didn’t cry – causing further
distress to his parents.
He was transported to another hospital and diagnosed at 5 days old with a condition his parents had “never heard of ” – Alagille syndrome.
“It was a very traumatic birth; I was screaming and crying ‘What is happening? Are we going to lose him?’,” Gemma recalls.
“I still fear we might as he has been given a death sentence in the UK [where they live], as medics are unable to operate on him. Logan has severe cardiac abnormalities and his blood is only half oxygenated. His heart isn’t strong enough to sustain a new liver.”
Logan’s liver is unable to process the bile in his body, meaning it becomes absorbed into his skin. This causes burning and itching, as well as turning his skin a sickly yellow.
Because of his heart and liver defects, the smiley toddler can’t absorb food properly, and is still only the size of a 6-month-old baby.
The condition also means Logan’s vertebra is misshapen and he spends long periods of time in hospital.
Gemma has quit her job as a supermarket manager to become Logan’s full-time carer and Lloyd has been on compassionate leave since his son’s birth.
Despite the regular hospital visits and cocktail of medication, Gemma says brave Logan never ceases to amaze her with his happy smile.
“I spend every day with him fearing it could be the last time I get to see his beautiful smile. If he didn’t have yellow skin, people wouldn’t even know he is sick as he is so jolly.
“Despite being rushed into hospital every month, he loves everything about life and has taught me so much and even on my darkest days, he does something cute to make me laugh.”
But Logan’s happy persona disappears when he sees a doctor or nurse, as he suffers from white coat syndrome and fears they may “poke and prod” him with injections.
The family hope to take Logan to California to see an Alagille syndrome specialist.
Strangers have donated more than $9000 through Gofundme, which will cover the cost of flights to the US, but the family hope to raise enough to cover the cost of surgery.
“Every day
Logan is fighting and there is no way I am ever going to give up on my baby boy,” Gemma vows.
“His heart and liver will only get worse without surgery, which is why I am desperate to get him to California.
“I hope and pray the specialist takes his case on; [it’s] our only hope.”
The cost will be around $50,000 – “something Lloyd and I can’t afford,’’ she says.
“We are overwhelmed by the support from the kind people who have donated.”
• To donate, visit gofundme.com/f/ hope-for-a-alagille-worrior