#reverserett; Woods takes a stroll towards a cure

Liam Woods was diagnosed with Somatic Mosaicism MECP2 Deletion, otherwise known as Rett Syndrome, at the age of six in 2015. Rett syndrome is a genetic neurological disorder becoming apparent after 6-18 months of early normal development. Liam, pictured here with his support dog, Sarge, will be well represented at the third annual 3rd Annual Iowa Strollathon, a fundraiser for Rett Syndrome research at Kinzler Construction in Ankeny on Saturday May 4th from 11a.m. to 2 p.m.  (submitted photo) 












Woods takes a stroll towards a cure

By Megan Molseed

It took just over six years for Alesha Woods and her husband, Danny to get answers for their son, Liam.  

“Early on, he hit a lot of his milestones,” the young mother of two explained of her youngest son who was diagnosed with Rett Syndrome in 2015.  

“Then, at just a few months old he started to fall short with certain benchmarks,” the young mother continued.   “By 18 months he still wasn’t walking.  That’s when we started looking at specialists.” 

Through a variety of referrals from the local clinic, the Woods’s finally made their way to the Mayo Clinic in Rochester, Minnesota where their son underwent a variety of tests, eventually being diagnosed with Rett Syndrome.  

Rett syndrome is a genetic neurological disorder becoming apparent after six-18 months of early normal development. 

The resulting regression leads to lifelong impairments, often including symptoms such as lost speech, seizures, scoliosis, irregular breathing patterns, and more than half of the children lose the ability to walk. Those diagnosed with Rett syndrome require maximum assistance with basic daily activities.

“Liam was diagnosed with Somatic Mosaicism MECP2 Deletion otherwise known as Rett Syndrome in 2015,” Alesha explained of her young son.  “While Rett Syndrome is mainly a girls’ disorder, it’s not true that boys can’t have it. There are an increasing number of boys who have been diagnosed with Rett, and that so happens to include Liam.” 

Woods added that she isn’t sure if the fact that Rett is uncommon in boys led to the delay in her son’s diagnosis.  

“It’s possible it could have been overlooked at points in the process, since he didn’t fit the typical criteria of the syndrome,” she noted.  “There were a lot of other factors, too.  Some cases of Rett's can be so extreme that the child is unable to move at all.  While Liam was delayed in walking and other milestones, he was eventually able to pick some of them up.”  

While Liam, who is currently attending fourth grade at Valley Elementary, spends much of his day at school in specialized guidance, he and his companion, a support dog named Sarge, spend a good chunk of the day integrating with his age peers.  

“He really enjoys the time in the regular classroom setting,” smiled Woods.  “Liam does require maximum care for most daily tasks, but we are very fortunate with him; while he does have his obstacles, he can do many things some Rett patients are unable to do.”

Including one of the joyful young fourth-graders favorite tasks – taking a stroll.  

And this weekend, Liam will be well represented as many of his friends and loved ones take part in the 3rd Annual Iowa Strollathon, at Kinzler Construction in Ankeny Saturday May 4th from 11 am to 2 pm.  

The goal of the event is to raise money but also to provide a chance for Iowa families to socialize, network, and interact with people who can relate to the condition,” explained Woods. “This is the 3rd year. Year 1 they raised $88,000.00 and the next year they hit $100k and they hope to hit $100k again this year.”

A family friendly event, The Strollathon will include activities like balloon twisting, face painting, a petting zoo for the kids and food, drinks and live music.  There will also be a silent and live auction for the whole family.

“Team Liam is going strong, right now,” smiled the proud mother adding that even her oldest son, Jaxon will be part of the effort.  “We are all getting ready for the walk.  It should be a wonderful day.” 

Those interested in being a sponsor for Team Liam can find more information at curerettiowa.com to learn more about the event or if you would like to become a sponsor. 

“People can go to Cure Rett Iowa on Facebook and Instagram to find out more information on the walk or the fundraising,” explained Woods.  “There is also going to be online bidding for the auction and all those details are shared on Facebook if people would rather donate that way instead of specifically to Team Liam.” 

Donations will help fund important research and family support. 

 “Right now the focus is on reversing Rett Syndrome.  If they can find a way to genetically reverse the genetic components, it could possibly be fixed,” said Woods.    

“Your donation will help fund important research and family support,” she continued. “This cause is very important to our family and we appreciate your help as we fight for a cure for Rett syndrome.  Your help is our hope!” 




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