When Lindsey and Greg Renick learned they were having a baby girl, images of frilly pink clothes, baking cookies and prom dresses filled Lindsey’s mind. Her baby daughter would grow up to have sleep over parties, paint her nails and someday, get married and have a family of her own.
Those images were short-lived. Now, the family asks the community for help raising money for research through a picnic fundraiser to be held from noon to 5 p.m. Saturday, Sept. 15 at Windjammer Park in Oak Harbor.
By age 1, baby Mackenzie wasn’t functioning the same as other girls her age. She didn’t sit up alone or crawl and had already gone through two corrective surgeries for eye and ear issues. Lindsey had a “mom gut feeling” that something wasn’t right.
After months of therapy with little progress, Lindsey convinced the pediatrician that there was more to Mackenzie’s developmental delays and the developmental pediatrician department at the Navy Hospital in Virginia, their home at the time, consented to “poke and prod,” Lindsey said.
“Let me tell you, there are times in your life when you pray to be wrong,” Lindsey said.
But Lindsey’s gut feeling wasn’t wrong. Pediatricians discovered that 20-month-old Mackenzie was functioning at the 6 to 8 month level, Lindsey said. The pediatrician threw around a few possible disorders and said Mackenzie could be that way forever.
“I cried all the way home,” Lindsey said.
At home, she cried some more before channeling her fears and anger into research.
“I felt like every dream I had for her life was gone. I have since learned that those dreams are just different,” Lindsey said. “I went from dreams of playing dress up and prom shopping to hoping she could ever help dress and undress herself. Future potty training stress now became wondering how long she would be in diapers. The answer is possibly forever.”
“Our little girl would never learn to drive, instead I will always need to have room in the car for her specialized equipment,” Lindsey continued. “Gone was the image of her walking down the aisle, replaced by wondering if she would ever walk.”
Thanks to an offhand comment by a physical therapist, Lindsey and Greg learned of Angelman Syndrome, a neuro-genetic disorder that affects one in about 20,000 children. Characteristics of the disorder include developmental delay, lack of speech, seizures and walking and balance disorders, and individuals with Angelman syndrome will require life-long care, according to the Angelman Syndrome Foundation. The syndrome stems from problems with a single gene.
Tests revealed that Mackenzie was an Angel, which Lindsey said was a relief in the face of a number of scary disorders. Consistent with effects of the syndrome, Mackenzie has blonde hair, blue eyes and porcelain skin and is constantly a little angel: smiling a dimple-cheeked grin and giggling.
Now, at age 4, Mackenzie walks and the little angel has also transformed into a monkey who climbs all over everything, Lindsey said. Giggling, she tromped around the Renicks’ living room, clasping a toy in her hands and laughing at her dad’s loving nicknames for her or at the antics of her brother, Rowan, 6. She attends Hand in Hand Learning Center in Oak Harbor.
Lindsey is a work-at-home mom for Angel’s Food Custom Cakes, named after her angel, and Greg is a Command Master Chief for VAQ-129 at Whidbey Island Naval Air Station. The Renicks moved from Virginia to Oak Harbor earlier this year.
“Every day is like having any other child except for the communication,” Lindsey said. Mackenzie isn’t able to tell her parents when she isn’t feeling well, and she also can’t comprehend her parents’ demands, even when she is in danger. If she burns her hand on the stove, she would go back and do it again 10 minutes later because she can’t understand, Lindsey said.
The scariest effect of Angelman Syndrome is the seizures. A few weeks ago, Mackenzie had her first.
“It was absolutely one of the most terrifying moments of my life,” Lindsey said.
Mackenzie’s uncanny ability to climb up, around and over everything has aged Lindsey by years, Greg said. Mackenzie sleeps in an enclosed bed — which she climbs on, too — because she gets up as early as 2 or 4 a.m., completely energized.
“She puts stress into you in two seconds when she’s in danger and takes it out in two seconds with her smile,” Lindsey said. Even after tripping while gallivanting around the living room, Mackenzie was up again, beaming, a moment later. “She’s always happy. That’s a trait of an Angel baby,” Lindsey added.
“We look at it as a blessing,” Greg said, hugging his grinning daughter. “It kind of forces you to be more patient, more understanding.”
Sometimes, the people the Renicks have to be the most patient with are strangers who approach Mackenzie and ask what’s wrong with her. They absolutely hate that question because there is nothing wrong with Mackenzie, Lindsey said. “Normal” isn’t a word in the family’s vocabulary.
“There will hopefully come a point when you say ‘Angelman Syndrome’ people don’t cock their head and say, ‘What’s that?’” Lindsey said. The Renicks hope their fundraiser picnic will raise awareness for the syndrome. They were stunned to discover another Angel family in Oak Harbor and one in Freeland. A few other Washington Angel families will attend the picnic.
“When you get two together, that’s amazing,” Lindsey said. Another Angel mom told her “you feel like every Angel child is yours,” Lindsey said. When an Angel gets sick or meets a milestone, it could be your own child next or you’ve been there, Lindsey added.
Actor Colin Farrell’s son was diagnosed with Angelman Syndrome, bringing further awareness to the disorder.
“We don’t have Jenny McCarthy, we have Colin Farrell,” Lindsey laughed.
At the end of the day, the Renicks are just a family with a special blessing, they said.
“She’s happy and she’s healthy and she’s incredibly well-functioning. We hope that she talks at some point,” Lindsey said.
“We think the best part about this is she’ll always be pure and innocent,” Greg said.
“She’ll never get her heart broken,” Lindsey added.
“Every day, when she sees her mom and dad, she’s instantly happy,” Greg said.
When the community meets her at the Angelman Syndrome Picnic Fundraiser, it will be impossible not to smile at the charming little angel. So far, the Renicks have raised more than $1,000 for Angelman Syndrome research, which surpassed last year’s total. Twenty-five businesses have donated so far and are sponsoring the event with food and auction prizes. This is the second year the Renicks have hosted the fundraiser.
“A lot of businesses have been incredibly helpful,” Lindsey said.
“We’ve been amazed with the level of support from the community and people willing to help out,” Greg said, adding that that’s wonderful with how rare Angelman Syndrome is.
“Each Angel is a perfect pure representation of happiness, unconditional and unending love, light, strength and beauty. Our daughter is just one shining example of what God can create and how he can teach the world through an Angel who can’t say a word,” Lindsey said.
To donate to Angelman Syndrome research, visit the Renicks’ fundraising page at https://fundrazr.com/campaigns/dLC23.
Meet, support an angel
The Renick family will hold a fundraising picnic from noon to 5 p.m. Saturday, Sept. 15 at Windjammer Park in Oak Harbor.
Money raised will fund Angelman Syndrome research.
Visit the fundraising page at https://fundrazr.com/campaigns/dLC23.
