logo

6-year-old girl with dementia saves life of 3-year-old sister thanks to their special connection

Aby Rivas
Nov 22, 2018
04:54 A.M.

For Gail and Matthew Rich, it has been devastating to deal with the disease that attacks their two daughters, and on top of that, they have to fight for the treatment they deserve. However, the girls have an incredible connection that not even an incurable disease can erase.

Advertisement

Nicole and Jessica Rich are diagnosed with Batten disease, a genetic condition that affects the nervous system which has no known cure and no treatment available on the NHS. Affected children can suffer a loss of sight, speech, and motor skills, as well as dementia, mental impairment, and seizures.

Advertisement

THE DIFFERENCE TIME CAN MAKE ON THE DIAGNOSE

Nicole, 6, was diagnosed two years ago. But it was too late in the development of the disease to stop the most devastating symptoms. She can’t eat or walk by herself and has never spoken, which was the first sign that took her parents to find help.

“Nicole saved Jessica - it's what we have been told many, many times.”

Advertisement

Jessica, 3, on the other hand, is a bubbly, sweet girl that leads a “normal life,” except for the fact that she has to receive a treatment that’s directly injected to her brain twice a month at the Great Ormond Street Hospital, where she’s joined by Nicole too.

The youngest Rich was only 1-year-old when Nicole was diagnosed, which prompted Gail and Matthew to run the test on Jessica too, hoping to receive good news but getting devastated after she was also diagnosed with Batten

Advertisement

A SPECIAL SIBLING BOND

However, getting an early diagnose has made a significant difference in Jessica’s experience with the diseased, in comparison to her older sister. “Nicole saved Jessica - it's what we have been told many, many times,” said Gail. "If it wasn't for Nicole, nobody would have known about Jessica until it might have been too late.”

Advertisement

Little Jessica dotes on her big sister and acts like a “mother hen,” according to the girls’ mom.

“If she coughs, she'll run to tap her back. She holds her hand when they are together and leads her around. She'll go slow to help her and cuddles her and pats her face. She's just so lovely. Of course, she doesn't fully understand - but she knows they have a bond and that gives us hope."

Advertisement

THE TRIAL TREATMENTS

After Nicole was diagnosed, the Rich family heard about a treatment trial running in the UK, but the spots were taken. However, with the help of the Batten Disease Family Association, Gail and Matthew fought to get their daughter an extra place, and she started the treatment in January 2017.

Jessica, on the other hand, earned a spot on a separate sibling trial in Hamburg and started the treatment in May 2017. Gail and Matthew had to take a child each one and travel to London and Germany every two weeks for ten months.

Advertisement

Last March, Jessica was given a spot on the same treatment trial as Nicole at GOSH, and now they get to hold hands while receiving an enzyme replacement therapy given directly into their brain by a device which sits inside the skull.

Jessica is still not showing symptoms, and while is devastating for the Rich to have the perfect examples of an early and a later diagnose on their family, they’re not dwelling on the “what ifs.” Instead, they’re hopeful about the future, even though children with the disease usually don’t survive to their teenage years.

Advertisement

“We know Nicole will never be able to walk by herself again, but we don't sit and cry about what she can't do every day. We have three beautiful children who are here with us now. It's time to make memories - and we have lots more to make."

The family is always working to raise awareness about the Batten’s disease and o raise funds for research through the Nicole Rich Foundation.

Advertisement
info
Please fill in your e-mail so we can share with you our top stories!
By subscribing, you agree to our Privacy Policy
Advertisement
info

The information in this article is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, and images contained on news.AmoMama.com, or available through news.AmoMama.com is for general information purposes only. news.AmoMama.com does not take responsibility for any action taken as a result of reading this article. Before undertaking any course of treatment please consult with your healthcare provider.

Related posts

6-Year-Old Brother Doesn't Want to Leave Dying Sister and Comforts Her for the Last Time

May 02, 2022

Family Says They Learned What God's Love Is after Adopting Boy Traumatized for 7 Years

March 08, 2022

Farrah Fawcett Had Exhibited Painful Symptoms for a Long Time before Finding Out She Had Cancer

February 18, 2022

Sarah Jessica Parker Found Out Son Had Life Threatening Allergy When He Started Breathing 'Very Labored'

April 28, 2022

Meet Jeff Bridges' Wife of 45 Years & 3 Daughters Who Stood by Him amid His Fight for Life against Cancer

April 10, 2022

Former Nurse Adopts Babies No One Else Wants So She Can Spend Their Last Moments with Them

April 18, 2022

Robin Roberts' Sister Was the One Who Saved Her Life When the Anchor Had Just 1-2 Years to Live

March 07, 2022

‘I’m Waiting for Mom,’ Girl Says to Park Janitor, Next Day He Sees Her Still Sitting at Same Spot – Story of the Day

May 24, 2022

Man Had to Choose between Saving Wife or Baby Daughter's Life: 'It Was Going to Take a Miracle'

April 04, 2022

18-Year-Old Dancer Cuts Parents Out of Her $3M Prize After They Urge Her to Get Rid of Her Baby — Story of the Day

February 08, 2022

Little Girl Grabs Dirty Homeless Man’s Hand and Takes Him to Her House — Story of the Day

March 29, 2022

Annette Funicello Was Unable to Eat, Drink & Talk during Her Last Years — Her Husband Never Gave up Hope

March 02, 2022

Mom Notices Strange Man Crying Every Day as He Watches Little Girl at Playground — Story of the Day

March 23, 2022

Inside Dick Van Dyke & Decades Younger Wife’s Home Where He Shows off Routine He Says Will Get Him to 100

April 22, 2022