OZONE, Ark. – One Arkansas family is mourning the loss of their 16-month-old daughter who received more than 1,400 cards (and still counting) from around the world including one from President Donald J. Trump.
Sadly, Lucille French never made it to her second birthday and died in her sleep on Sunday, March 17 at her home in Ozone (Johnson County), according to a Facebook post from Tenessa French, the mother of Lucille.
The toddler was diagnosed with a rare gene mutation disorder that affects the nervous system called, Krabbe Leukodystrophy.
Her parents, Stephen Jr. and Tenessa French, had hoped to spread awareness about leukodystrophy in hopes more parents would push to have it put on the newborn screening and hopefully one day lead to a cure.
“I am honestly hoping that we can get leukodystrophy – maybe not Krabbe specifically but all the leukodystrophy on the newborn screening,” Tenessa Frech says. “So this can be caught sooner where something can actually be done to help change this.”
The family is asking instead of sending flowers, to send small stuffed toys they can collect and take to children in hospitals in Arkansas to continue spreading Lucille’s message.
Stuffed toys can be sent to the address below:
ATT: Lucille’s Prayer Warriors
5432 County Road 5440
Ozone, Arkansas 72854
Prayers and condolences can be left for the family on Lucille’s Facebook page.
OZONE, Ark. – Lucille French’s second birthday isn’t until October but she has already received more than 500 birthday cards in the mail.
This special little girl has received birthday cards from all over the world – even some as far as Australia.
One birthday card arrived on Monday and came directly from the White House, signed by President Donald Trump.
“It was mind-blowing,” says Tenessa French, mother of Lucille. “It really shows that he cares.”
Lucille French lives with Krabbe (krah-buh) Disease, a rare and likely fatal condition that attacks the nervous system. On April 24 she will be turning 1 1/2 years old. This is a huge milestone because she is already living longer than doctors expected.
Diagnosed at only 4-months-old her parents knew at any moment they would have to say goodbye to their beautiful baby girl.
“It’s hard because there is nothing we can do for her,” says Tenessa French, mother of Lucille.
The rare disease affects about 1 in 100,000 people in the United States and is an inherited disorder that destroys the protective coating of nerve cells in the brain and throughout the nervous system.
“I know when she does go. She won’t be in pain anymore,” says French as tears roll down her face. “All that will be over. So she will be better off. Cause right now she is just suffering.”
After several two and half hour drives to Arkansas Children’s Hospital in Little Rock, her parents received the confirmation that nothing more could be done for Lucille.
“I think she stood with us longer than expected to help bring awareness to this disease,” French explains.
French recently shared a post that her neighbors in Ozone started, wishing Lucille a happy birthday for making it another six months.
The post received lots of attention; birthday, get well, and prayer cards started being delivered to the family’s home.
Now with more than 500 cards and packages, the family says they are beyond grateful.
“I don’t know what to say,” says French. “We have received so much love and support from so many people and even strangers.”
The family hopes awareness about this condition will one day lead to a cure.
“I am honestly hoping that we can get leukodystrophy – maybe not Krabbe specifically but all the leukodystrophy on the newborn screening,” Frech says. “So this can be caught sooner where something can actually be done to help change this.”
Currently, only six states have leukodystrophy on the newborn screening list.
French says she has still more cards to open but will continue reading every card to her daughter until her last breath.
If you would like to send a birthday card to Lucille here is the address:
5432 Cr 5440
Ozone, AR 72854