Born with a chromosome defect that doctors tell her family nobody else in the world has, Lainey Robertson was getting ready to come home on Wednesday from her most recent of many hospital stays.
Lainey’s mom, Wendy Frye, says Lainey was born with a deleted ninth chromosome and a duplicated 15th chromosome. She has spent much of the past year in the hospital and nearly died of complications during surgery this past summer.
Doctors performed CPR for 12 minutes on her when she coded during surgery, and her many hospital stays included 120 days of continuous hospitalization.
“Until this summer, Lainey was very healthy, no medications and never had to be hospitalized except for surgery in 2014,” explains Wendy.
2018, however, was a drastically different story for Lainey and her family.
“She nearly lost her life three times in the last six months and one of those times was in my living room,” says Wendy. “She has had six surgeries these past 6 months and needs three more mostly due to complications from her previous surgeries.
“I would say that Lainey has been in the hospital a total of 5 months out of 6. She is getting discharged home today. She will not be able to go to school this year due to low immunity, weakness and deconditioned and more medical appointments, surgeries etc.
“Lainey continues to fight and write her own book on this journey we call life. Her four parents have been there for her and each other the whole time! We all have had to miss countless days of work. I have not been to work since July 12th, 2018. I have no idea when I will be able to go back if ever. We have been waiting for a home nurse for 3 months with no luck.’
‘Fix me, please, Dr. Greene!’
On Sept. 15, Lainey and her family boarded an Angel Med Flight plane for the ride to Michigan, where a specialist named Dr. Glen Green of the C.S. Mott Children’s Hospital in Ann Arbor awaited her.
In a video before the flight, someone asked Lainey what she would say to Dr. Green.
“Fix me, please,” was her reply.
Lainey had nearly died earlier in the year because her airway collapsed during surgery. Dr. Green specializes a treating a variety of congenital conditions, including those like Lainey’s. She had the operation on Oct. 1, and it went perfectly says, Wendy.
The family has since returned to Iowa, where Lainey receives most of her care at the Stead Family Children’s Hospital at UIHC in Iowa City.
To show support for Lainey and her family and help them with all of the various expenses related to her illness and medical care, Oak Grove Church in rural Shellsburg is planning an all-day benefit on Saturday, Feb. 2.
The event begins with a pancake breakfast beginning at 8 am, followed by a BBQ beef sandwich lunch, and will finish with a chicken and biscuit dinner at 5:30. There will also be a silent auction, cash and carry crafts, bake sale, and kids make-and-take crafts. Organizers promise there will be something for everyone.
In September, on 9p- Day, Wendy wrote about how and when they discovered what Lainey was facing:
Miss Lainey was born 11.5 years ago! She was 10.2 lbs and almost 24 in long! Bryan and I were told she looked different and they thought she had a chromosome abnormality. After 9 days in the NICU, it was confirmed she had a partial duplication of her 15th chromosome. One month later during genetic counseling, we found out that she not only had a duplication of the 15th but also a partial deletion of her 9th chromosome. We were told nobody has this chromosome arrangement and that there was no way of knowing how Lainey would turn out.
After months of searching the web for answers, I came across this group called the 9p- group. There are about 500 members in the world with children with the same 9th deletion that Lainey has. This group has been a wonderful support to me over the years! Although, many of the kids with Alfi syndrome are at different levels with an array of different disabilities they still do have a lot in common. I have yet to find a person with the same exact chromosome arrangement as Lainey which just shows she is one beautifully unique and wonderfully made little girl!! I am so thankful for this 9p- family!
To clarify, says Wendy, there are 500 people in the world who have the deletion of the 9th chromosome called Alfi Syndrome. However, there are only 10 people known to have the duplication of the 15th chromosome like Lainey, but there is nobody else in the world yet who has both together as she does.
Concerning Lainey’s future, Wendy says, “We are just waiting on the Lord and taking one day at a time.”
Click for information about events happening to raise funds for Lainey and her family!
Click for more about Alfi Syndrome