Last night, I photographed two of Scotland's iconic structures which were illuminated orange in support of Batten Disease 🏴🧡
#WallaceMonument #Falkirk Wheel #Stirling #Falkirk #Scotland #battendisease awareness #BattenDay #battendisease
Another night of no sleep until 6AM for Amelia (seen here with oxygen on). Secretions have been challenging. She’s needed a lot of chest PT and oxygen while we work all night to clean her airway.
#BattenDisease Awareness Day is June 9th and we’d love any help spreading the word!
Two of Central Scotland's iconic landmarks illuminated in orange to raise awareness for Batten Disease.
Check out more info here: facebook.com/nicolesbattenj… & bdfa-uk.org.uk
#Scotland #wallacemonument #falkirk wheel #stirling #falkirk #battendisease #battenawarenessday
19 years ago today, I lost my little sister, Caitlin, to the CLN2 strain of #BattenDisease . She was 9 years old. If you would like to know more about this cruel, devastating rare disease, please consider visiting bdfa-uk.org.uk
Thanks ❤️ xx
Dystonia (involuntary muscle contractions) is common for those with #BattenDisease . For Amelia, it often means clenched fists and curled-up arms. She wears a variety of braces to help stretch out her limbs and hopefully give her stiff muscles, tendons, and joints a break.
The #battendisease conference has started off with new and old friends! BDSRA Foundation Effie Parks
#danceparty 🕺💃
With #BattenDisease , every birthday is special and precious — this one in particular. A month ago, we didn’t know if we’d be able to bring you home from the hospital and celebrate today. Happiest of birthdays to our amazing 7-year-old! You continue to inspire us every day.
Amelia’s had a few chances to relax in her hot tub since returning from the hospital. She’s been more irritable and quicker to cry lately, and her #BattenDisease prevents her from telling us why. So we’re thankful she still enjoys a warm soak!
Broke out the oxygen concentrator to help keep Amelia’s blood oxygen levels up. Sometimes, we have to put in some extra respiratory therapy work to keep her airway clear.
#BattenDisease remains a horrendous condition.
Late night hot tub session and we’re grateful she enjoys it. Still struggling with sleep and bouts of what seems like physical discomfort (but could also be neurological). Some nights, she won’t relax until 6 or 7AM. #BattenDisease is so challenging, but we’re doing our best!
Moinsen from Hamburg! 🇩🇪 We're at #NCL2023 to co-present a poster which explores our use of at-home video capture via smartphone to develop more meaningful endpoints for #BattenDisease #CLN5 #ClinicalTrials . #vCOA
Amelia had some stander time today and it went well. Hip dysplasia is common with #BattenDisease kids. She’s still struggling with pain and discomfort, leading to some lonnnng nights/mornings. We’re working with her docs to figure out ways to make her more comfortable. 🤞🤞
Amelia had more Botox injections today. A bit different this time to avoid sedation after her hospital stay. Hope it helps tame her secretions. #BattenDisease robbed her of the ability to reliably cough to clear her airway, so it can boost her quality of life and overall safety.
RECAP: BDSRA President & CEO Amy Fenton Parker details her visit at the University of Rochester (University of Rochester) for Batten Research Day this past Friday.
#BattenAdvocatesForACure #BattenDisease #Research
Losing her eyesight, Addy was misdiagnosed a few times. We kept pushing for answers& then we had the devastating news that no parent ever wants to hear. She was diagnosed w/ #battendisease a rare genetic disease, there is no cure, it is degenerative, and fatal. Learn more BDSRA Foundation
Amazing/Inspiring preclinical work in #BattenDisease by Jonathan Cooper Washington University Department of Pediatrics during today’s #PPI Meeting!
A ride of two halves yesterday evening. Started in beautiful sunshine and ended up with a sunset 🤔 and coffee in mist...
Enjoyed it!
#richsistersbeatingbattens #nicoleandjessicarichfoundation #letsbeatbattens #battendisease #cln2
