Boy fights rare tumour
Appeal launched to help with costsJO MCKENZIE-MCLEAN
At first glance 4-month-old Braylin Tickle looks like most babies - chubby, cheeky, with bright eyes and a happy dimply smile.
But the infant was born with the rare syndrome - Beckwith Wiedemann - which affects about one in 15,000 children.
The overgrowth syndrome causes Braylin to have an enlarged tongue, enlargement down the left side of his body and internal organs and ear pits. He has low blood sugars and he is at increased risk of growing tumours and cancers.
The Beckwith Wiedemann Children's Association of NZ has launched a fundraising effort for Braylin as doctors last week discovered a tumour, which could be cancerous, growing on his adrenal gland.
Braylin and his family, who live in Cromwell, will have to travel to Christchurch Hospital for surgery and possibly follow-up treatment if the tumour is cancerous.
Spokeswoman Carolyn Walker said the money will help the single-income family with costs associated with travelling and staying in Christchurch, as well as medical care for Braylin.
"As we all know, being away from home is not the same as being at home and costs are going to be pretty huge. Because of the syndrome, cancers need to be treated pretty quickly."
Braylin's mother, Chloe Tickle said the past four months had been extremely stressful trying to understand and deal with implications of the syndrome and getting doctors to understand.
There is also the travelling back and forth to Dunedin for check-ups and tests every six weeks and juggling everything around her other two children Lucas, 6 and Kieran, 3.
"It's really stressful, you don't know what's coming and no-one knows about his syndrome.
"When you ask the doctors they say they have to google it and ask me if I have got any information. I even had to take the doctors a DVD to watch that I was given by a support group. That's a worry for me."
When Braylin was born he weighed 5kg and did not breath for 12 minutes.
"My C-section took three hours and it took 45 minutes to get him out because he was so big . . . If I was in Auckland it would have been picked up in utero but down here because there was no knowledge of it it wasn't picked up."
Because he was born with a protruding tongue, doctors initially told the Tickles their son was tongue-tied. Three days later, after an ultra sound revealed his enlarged organs and bloods were sent to Melbourne for testing, it was discovered Braylin had Beckwith Wiedemann Syndrome, she said.
His protruding tongue meant feeding was difficult - he initially was tube fed but now could feed with a teat sitting to the side of his mouth. She was working constantly with a speech therapist who made sure Braylin was feeding properly and would be supervised when it came time to introducing solids to make sure he did not choke. He also had to sleep on his side to make sure he did not stop breathing. She also worked with a physiotherapist to help with Braylin's movement, she said.
"I have had to give up work to look after Braylin - he can't go to daycare because there is no one-on-one care - and my husband has used up all his annual leave and sick leave."
The money raised would go to the foundation first who then would administer payments to the family specifically for Braylin's treatment and associated costs.
People can make donations to givealittle.co.nz/cause/Tickles
- The Mirror
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