Fenton’s Mom Thanks Online Community For Helping Save Son’s Life | News

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Ashley Palenkas seeks to uncover the cause of her three-year-old son’s health problems.

“It’s a dark place,” said a tearful Palenkas.

Palenkas balances the tears of grief with the newly discovered tears of joy. Her son, Ryland, leads her down a path she could never have foreseen when she was a future mother just a few years ago. When Ryland was born, she was diagnosed with a condition called ptosis. He had weak eyelid muscle and underwent corrective surgery when he was one year old. Palenkas says she realized there was something more serious with her baby boy.






“He didn’t eat and sleep very well, moms said give him rice cereal, it will fill his stomach, he will sleep through the night, so I did,” Palenkas said.

She says Ryland went into shock and started throwing up. She rushed him to the hospital emergency room. She was given fluids and she says doctors told her it was a stomach problem. She says that after a few weeks, the doctors suggested that she try the rice cereal again.

“We did it again, he threw up until shock four hours later. We went to the emergency room and after an IV he stopped throwing up and went back to being a normal child,” Palenkas said.

She spent hours researching and after several days she found other moms talking about what she called “F-PIES”. This is the syndrome of enterocolitis induced by food proteins, a delayed food allergy that causes severe vomiting and diarrhea.

Palenkas says an Ann Arbor specialist confirmed the find, but she knew something was wrong with Ryland. She says one night Ryland stopped breathing and once again rushed him to the hospital.

She waited months for an MRI for COVID, but once she did, the diagnosis was devastating.

“About an hour after the MRI, the doctor comes in and takes me aside and says we have reserved a room for you at the UM (hospital). It’s bad. It’s rare. Her first vertebra is so deformed that it pinches her brain stem, ”Palenkas said.






Ryland

Palenkas says only one doctor in the state would perform the operation to correct it. Ryland would undergo more than one spinal fusion operation. She says he was told he might never speak. She says a therapist suggested she consider giving Ryland up for adoption.

“It’s something that’s hard to relate to, hard for people to understand. People don’t know what to say, ”Palenkas said.

Palenkas says she found a group of moms like her who got the hang of it while she did all of her research to figure out what was bothering Ryland. She came across a website called “Extra Lucky Moms” which consisted of blogs from mothers with children with special needs.

“You feel less alone. You see real experiences of children like yours and you find hope and inspiration, ”said Taryn Lagonigro.

Lagonigro co-founded the website with his partner Jess Quarello. The two mothers are the parents of children with Down’s syndrome. The couple bonded with being parents of children with the disease and realized there must be so many more mothers like them.

“We can come and go and ask, is this working for you and share what works for me,” Quarello said.

The website says its mission is to “meet moms wherever they are on their way.” We are here to provide community, support and programs so that all moms can not only SURVIVE but PROSPER. “

The founders also believe that being an advocate for your child is extremely important because you know them better than anyone.

“It’s important that doctors also examine the child first and the diagnosis second,” Lagonigro said.






Ryland

Palenkas says she is learning to live in the moment and to be present. She said she felt less depressed after sharing her story on the “Extra Lucky Moms” website because she discovered the joys of having a child with special needs.

“I post pictures of my kids and it brings more joy than any meme,” Palenkas said.

Ryland is doing well and has just started walking after turning three. He serves as a guide for his mother on what she calls a beautiful journey. She says she sees life from a different perspective and that she, like all moms on the website, says she is lucky.

You can read more about “Extra Lucky Moms” and read Ryland & Ashley’s story on the site here.

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