X
theAsianparent Logo
theAsianparent Logo
Product GuideSign in
  • Awards
    • Parents' Choice Awards 2023
  • Pregnancy
    • Due date calculator
    • I'm pregnant
    • Trying To Conceive
    • Labour
    • After birth
    • Baby loss
  • Parenting
    • Parent's Guide
    • Relationship & Sex
  • Child
    • Newborn
    • Baby
    • Toddler
    • Pre-Schooler
    • Kid
    • Pre-Teen & Teen
  • Feeding & Nutrition
    • Diseases-Injuries
    • Breastfeeding & Formula
    • Meal Planner
    • Health
    • Allergies & Conditions
    • Vaccinations
  • Education
    • Pre-School
    • Primary School
    • Secondary School
    • Primary School Directory
  • Lifestyle
    • Money
    • Travel & Leisure
    • Fashion
    • Home
    • Fitness
    • Contests & promotions
  • News
    • International
    • Health
    • Celebrity
    • Singapore
  • TAP Recommends
  • Shopping
  • Press Releases
  • Project Sidekicks
  • Community
  • Advertise With Us
  • Contact Us
  • Become A Contributor
  • VIP

‘My Daughter Will Lose Her Memory Before She’s An Adult’

4 min read
‘My Daughter Will Lose Her Memory Before She’s An Adult’

After her parents noticed she wasn’t hitting her one-year milestones, little Ruby was diagnosed incurable brain conditon.

Upon first glance, four-and-a-half-year-old Ruby is the sweetest, most affectionate child who is full of joy. But behind the most gorgeous smile is a child whose future is plagued with doubt and debilitating illness.

Around 18 months ago, Ruby was diagnosed with BPAN disease, an incurable rare brain disorder also known as Beta-Propeller Protein-Associated Neuro Degeneration, which there is currently no cure for.

It’s a diagnosis no parent ever wants to hear – a moment mum Mandy and Dad Jonathan describe as the “absolute worst”.

“It felt like a bad dream. Being told that not only was our daughter going to struggle her whole life but those hard-earned skills that she was going to fight so hard to achieve would be lost – never to be regained – when the regression begins,” mum Mandy tells Kidspot.

bpan disease

Ruby is the most loving child, says mum Mandy. | Image source: Kidspot

BPAN disease: The symptoms no one thought would lead to this

When Ruby was around eight months old, Mandy and Jonathan noticed a few developmental delays in their baby girl.

“We noticed that she had some delays with her development. We saw different doctors and none of them thought there was anything alarming because she was such an alert and engaged baby,” Mandy recalls.

But when they hit 12 months, the family had a feeling something more serious was up when Ruby wasn’t reaching the regular one-year milestones.

“We realised that she was not doing any of the things regular babies are doing at this stage, like pulling to stand, crawling, waving, and pointing.”

bpan disease

Mandy and Jonathan with their children – Amelia, Ruby and Jamie. | Image source: Kidspot

Ruby’s heartbreaking diagnosis

Ruby’s devastating diagnosis of BPAN disease means her health will deteriorate rapidly in the years to come. She will suffer from Parkinson’s Disease, Dystonia, vision loss, and Alzheimer’s Disease before she is 20.

“It is very serious and unfortunately has a terrible prognosis. At the moment it affects her life by causing her to have serious development delay, seizures and difficulty with some of her gross motor skills,” Mandy shares.

“The diagnosis means that Ruby will have delays and difficulties her whole life but when she reached adolescence or her early 20’s Ruby will begin to regress.”

bpan disease

Ruby with her siblings – Jamie, 1 (left) and Amelia, 6 (right). | Image source: Kidspot

A future plagued with doubt

While Mum Mandy insists Ruby’s illness has brought the family close together and has given them a new appreciation for living in the moment, thinking about her bubbly little girl’s future is a “scary” thought.

“It is very sad and very scary. Ruby is such a delightful and affectionate child. She lights up a room and brings so much joy to everyone that meets her. The thought of what lies ahead is devastating.

“My biggest fear is that she will suffer and be in pain.”

It’s thinking about the future that has prompted Mandy and Jonathan’s push for a cure.

bpan disease

The family hopes for a cure to help others like Ruby. | Image source: Kidspot

Hope for a cure for BPAN disease

Giving sufferers of the same disease hope, the Murdoch Children’s Research Institute is currently exploring treatment options for BPAN disease with new cutting edge research underway.

The new research has the capacity to benefit many neurological disorders, including Motor Neuron Disease and Parkinson’s to name a couple. But in order to fun a second and third year of research, the institute needs to raise another $300,000.

While funding is a struggle, Mandy and Jonathan remain optimistic that a scientific breakthrough is possible for the incurable disease.  

“We are really hoping that the new research project will yield some results. They are using the most cutting edge technology and some very exciting new techniques. We are hoping that they will discover a treatment or a cure.

Partner Stories
4 Good Toilet Hygiene Habits for Kids to Have Early in Life
4 Good Toilet Hygiene Habits for Kids to Have Early in Life
Flu in Singapore: Is Your Family Protected?
Flu in Singapore: Is Your Family Protected?
6 Top Ways to Prevent Diaper Rash
6 Top Ways to Prevent Diaper Rash
Experiencing Mood Swings, Irregular Periods and Weight Gain Among Other Things? Here’s What You Need to Know About Hormonal Imbalance
Experiencing Mood Swings, Irregular Periods and Weight Gain Among Other Things? Here’s What You Need to Know About Hormonal Imbalance

In the meantime, it’s enjoying life with their full-of-life bundle of joy.

“Fortunately she doesn’t understand what is going on. She is just the sweetest most affectionate child. Full of joy and that’s what draws people to her.”

If you would like to help, visit Ruby’s Go Fund Me page. All funds will go directly to the Murdoch Children’s Research Institute.

 

This article was first published Kidspot and was republished on theAsianparent with permission. 

Get daily updates about our top stories when you follow us on Telegram at https://t.me/theAsianparentSG.

Got a parenting concern? Read articles or ask away and get instant answers on our app. Download theAsianparent Community on iOS or Android now!

img
Written by

kidspot

  • Home
  • /
  • Diseases-Injuries
  • /
  • ‘My Daughter Will Lose Her Memory Before She’s An Adult’
Share:
  • 'The Doctor in Thailand Said It Was a Cold - but Then Her Lips Turned Blue'

    'The Doctor in Thailand Said It Was a Cold - but Then Her Lips Turned Blue'

  • Experts Reveal Women Are More Likely To Experience Burnout From Work

    Experts Reveal Women Are More Likely To Experience Burnout From Work

  • Joshua Tan’s Wife Reveals His Romantic Side, Says Longest Separation Was Only 6 Weeks in 5-Year Long-Distance Romance

    Joshua Tan’s Wife Reveals His Romantic Side, Says Longest Separation Was Only 6 Weeks in 5-Year Long-Distance Romance

  • Wife Forgives Husband Who Had Two Affairs And Got A Woman Pregnant

    Wife Forgives Husband Who Had Two Affairs And Got A Woman Pregnant

  • 'The Doctor in Thailand Said It Was a Cold - but Then Her Lips Turned Blue'

    'The Doctor in Thailand Said It Was a Cold - but Then Her Lips Turned Blue'

  • Experts Reveal Women Are More Likely To Experience Burnout From Work

    Experts Reveal Women Are More Likely To Experience Burnout From Work

  • Joshua Tan’s Wife Reveals His Romantic Side, Says Longest Separation Was Only 6 Weeks in 5-Year Long-Distance Romance

    Joshua Tan’s Wife Reveals His Romantic Side, Says Longest Separation Was Only 6 Weeks in 5-Year Long-Distance Romance

  • Wife Forgives Husband Who Had Two Affairs And Got A Woman Pregnant

    Wife Forgives Husband Who Had Two Affairs And Got A Woman Pregnant

Get advice on your pregnancy and growing baby. Sign up for our newsletter
  • Pregnancy
    • Baby
    • Education
    • Events
    • Allergies & Conditions
  • Family Occasions
    • Breastfeeding & Formula
    • Child Safety
    • Health
    • Diseases-Injuries
  • Lifestyle
    • Home
    • Money
    • Feeding & Nutrition
    • Diet & Weightloss
  • Normal Delivery
    • Cesarean Delivery
    • Behaviour
    • Secondary School
    • Formula Feeding
  • Ages & Stages
    • Latching & Concerns
    • Festivals & Holidays
    • Education
    • Pre-teen & Teen
  • More
    • TAP Community
    • Advertise With Us
    • Contact Us
    • Become a Contributor


  • Singapore flag Singapore
  • Thailand flag Thailand
  • Indonesia flag Indonesia
  • Philippines flag Philippines
  • Malaysia flag Malaysia
  • Sri-Lanka flag Sri Lanka
  • India flag India
  • Vietnam flag Vietnam
  • Australia flag Australia
  • Japan flag Japan
  • Nigeria flag Nigeria
  • Kenya flag Kenya
© Copyright theAsianparent 2023. All rights reserved
About Us|Team|Privacy Policy|Terms of Use |Sitemap HTML
  • Tools
  • Articles
  • Feed
  • Poll

We use cookies to ensure you get the best experience. Learn MoreOk, Got it

We use cookies to ensure you get the best experience. Learn MoreOk, Got it

theAsianparent heart icon
We’d like to send you notifications for the latest news and updates on baby care and health.