Niles girl with rare genetic condition needs new hospital bed
NILES, Ohio (WKBN) – For the fifth year, Inspiring a Difference will be egging yards on Easter to help purchase a much-needed piece of medical equipment for the family of a child with disabilities.
Arianna Roberts is living with Trisomy 13.
'She basically has an extra 13th chromosome,' said Tyler Roberts, Arianna's dad.
Arianna was diagnosed with the rare genetic condition in utero and at 6 years old, she's already beaten the odds.
'She wasn't supposed to make it to birth and then once they make it to a year old, I think 5 or 10 percent make it to a year old, and then after that it goes down further,' said Alyssa Hutzler, Arianna's mom.
Arianna requires round-the-clock care. She can breathe on her own but uses a ventilator to help. She gets nutrition through a feeding tube.
'Obviously, she can't stand up by herself, she can't sit up, she needs someone with her at all times,' Tyler said.
He said Arianna will be like this for the rest of her life.
She spends most of her time lying down and is now in need of a new hospital bed.
'She's got strong legs. She will try doing some headstands. She will turn completely sideways. That's why we need a bigger bed,' Tyler said.
The struggle behind purchasing medically necessary equipment hits close to home for Danella Monsman. It's the reason why she started Inspiring a Difference.
'I will keep doing everything I can to get children what they need medically,' she said.
The nonprofit raises money to get assistive equipment for children with disabilities.
'I feel like even though we don't know each other, you know, there's this emotional connection because we know, as parents with children with disabilities, what everybody goes through,' Danella said.
Proceeds from the nonprofit's 2025 Egg My Yard fundraiser and others throughout the year are going to help get Arianna the bed she needs.
'Depending on the style or type of bed they pick out, it could be anywhere from $2,000 to $4,000 comfortably,' Danella said.
About 13,000 eggs have already been sold and there are still about four weeks left until the April 13th order deadline.
If you would like to 'Egg Your Yard,' contact Danella or Makenzie Monsman by emailing dmonsman@hotmail.com, or by calling or texting 330-647-0673.
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