DEBBIE NORRIS

A Grandmother of two. One of whom has Juvenile Batten Disease. A firm believer of #TogetherWeWillMakeADifference. #DementiaStrikesChildrenToo #IAmAwareAreYou?💖

[DEBBIE NORRIS @AUNTYDEBS]

Most days my grandson is the most kindest, caring and loving young man you could ever meet. But some days Batten disease takes over!!
#GoodDaysBadDaysAlwaysLoveHimDays

[DEBBIE NORRIS @AUNTYDEBS]

Today is International BattenDisease Awareness. So I am showing my orange for awareness. Much love to all families affected by this heartbreaking condition. ❤️xx
#ShowUsYourOrange #BDFA #BattenDiseaseAwareness

[BDFA @BattenDiseaseuk]

Andrew is dad to twins Freddie and Louie. They are among only 7 or 8 youngsters in the UK living with CLN5, a rare form of Batten Disease. As far as is known, they are the only twins in the world with this specific genetic disorder.
Read his story
https://t.co/ByQJJlFpDc

[Beefy's Charity Foundation @BeefyCharity]

One of the charities we support is @BattenDiseaseuk they help and support families across the UK who face the terminal diagnosis of this incurable disease. Vital funds are needed for both research and support. Please support if you can, today is their national awareness day!

[BDFA @BattenDiseaseuk]

In our next post for Awareness day, Pam and Gary tell us about their son Robert’s diagnosis with CLN3.

#battenday2023
#showusyourorange
#battenawareness
#bdfa
#battendisease
@BDSRA @bdfabattendisease

[BDFA @BattenDiseaseuk]

Liz, our Head of Fundraising, received a #ShowUsYourOrange nomination!🍊
As well as going orange for Batten Disease Awareness, our staff members have been sharing what wearing orange means to them. Liz shares the personal reason she is passionate about raising awareness below.🧡

[DEBBIE NORRIS @AUNTYDEBS]

@RealisticPoetry A little poem to make you smile 😊

[BDFA @BattenDiseaseuk]

🚴‍♂️Final 4 spaces available to join #TeamBDFA for @RideLondon on the 28th May!
An exciting 100-mile challenge through the Essex countryside and into the capital, whilst raising crucial funds for the BDFA's work🧡
Contact [email protected] for more details🚴‍♀️
#RideLondon

[DEBBIE NORRIS @AUNTYDEBS]

@RealisticPoetry

[DEBBIE NORRIS @AUNTYDEBS]

@Tinap66Payne Roberta. Which could be shortened to Bobby 👮‍♀️

[Laura Norton @lawrencenotrin]

We’re sharing our story today on #RareDiseaseDay #rarediseaseawareness exclusively with @hellomag for @CUREUsher follow and read the link to find out more and help us find a cure 🙏🏼🫶🏼 @JoepopProds https://t.co/41rKbkq10z

[DEBBIE NORRIS @AUNTYDEBS]

@lawrencenotrin @hellomag @CUREUsher @JoepopProds Thank you for sharing your story and raising awareness of rare diseases. I know it can’t of been easy for you both. Much love to you all xx

[DEBBIE NORRIS @AUNTYDEBS]

@allontheboard Thank you so much for raising awareness of rare disease #AllOnTheBoard #BDFA #BattenDisease #RareDiseaseDay

[DEBBIE NORRIS @AUNTYDEBS]

@allontheboard My grandson has Juvenile Batten Disease. A rare life limiting neurological condition that gradually robs a seeming healthy child of their sight, speech, mobility and eventually their life. But throughout it all they still have the most amazing smiles that will light up the room.

[SeeAbility @SeeAbility]

Today is #RareDiseaseDay & we're proud to provide world-leading support for juvenile CLN3 (Batten) disease.

CLN3 is so rare that it's often misdiagnosed for years, with people struggling to get the support they need.
@rarediseaseuk #RareDiseaseDay2023
https://t.co/PY2m8ielRB

[DEBBIE NORRIS @AUNTYDEBS]

@JeauxLatham I always called it the pictures. Grew up in the east end of London.

[DEBBIE NORRIS @AUNTYDEBS]

@Hamlea13 Hope you get well soon H xx

[DEBBIE NORRIS @AUNTYDEBS]

#RareDiseaseAwareness is on 28th February 2023.
My grandson is diagnosed with #JuvenileBattenDisease and one of the many symptoms is a loss of sight. He may be rare but he still shines like a diamond 💎
#RareDiseaseDay
#BattenDiseaseUk

[DEBBIE NORRIS @AUNTYDEBS]

@RealisticPoetry

[Kirsty Lewis @kirstylou30]

So pleased to see this today- Asda catering for children with a feeding tube! All little princesses deserve a twirly dress! Applause to @Georgeatasda. Inclusivity for all our CYP no matter their medical need.