This young man is Jaxen and his Ty Beanie sloth arrived in Montana πΊπΈ from the art show we did on Pompe Day π
π₯° π¦₯ π
#FindYourTribe #PompeDay #RareDisease #NewbornScreening
Molly's Ty beanie sloth arrived safely today.
Great reading Molly!
I love the name Trouble for a sloth, it's perfect! π₯°π¦₯
#PompeDisease #FindYourTribe #RareDisease
Our first sloth arrived for Emmalee π₯° She is so excited!
#FindYourTribe #PompeDisease #NewbornScreening #RareDisease
Teddyβs sloth arrived a few days ago in Florida USA πΊπΈ just in time for his 2 month photoshoot! Thanks so much for spreading awareness and support!
#PompeDisease #NewbornScreening #FindYourTribe #RareDisease
Timothy's sloth π¦₯ arrived safely in Florida πΊπΈ
It's bigger than he is π€
Hope you like it little man ππ #FindYourTribe #PompeDisease #NewBornScreening #RareDisease
Josephine's Ty beanie sloth prize arrived safely π following the children's art show π¦₯
We are lucky to have such a great community β€οΈ
#FindYourTribe #PompeDisease #NewBornScreening #RareDisease
Our sloths arrived all the way from the UK. π my kids love how different all 3 sloths are. Audrey had decided to name her sloth Pineapple. Thank you Julie Garfield for bringing a smile to my kids faces during this tough transition
#FindYourTribe #PompeDisease #NewbornScreening
Today is undiagnosed children's day 2024 π
Why is this relevant to a Pompe page?
Well, without newborn screening our children often have a long difficult path to diagnosis, often coming at a time of medical crisis, after damage has already been done.
#UndiagnosedIllnessDay
McKenzie's Ty Beanie sloth arrived safely in Maine πΊπΈ
Kenzie was the very first host 6 years ago & she did a lovely job. It is Hope Travels anniversary is coming up in May& I had no idea it would evolve & carry on for 6 years. Thanks to everyone for your support
#PompeDisease
The latest from Keara Engle ππ
'A new wheelchair accessible home is perfect for my son with Pompe
This growing family is moving to a bigger, more accessible home'.
#PompeDisease
pompediseasenews.com/news/new-wheelβ¦
If you have a child under 16 that has been recently diagnosed with Pompe Disease, or if they are about to start treatment, message us and we will send them a furry sloth to keep and take to any treatment or appointments
π¦₯ ππ
#PompeDisease #FindYourTribe
#IOPD #LOPD
Pompe pathways & empowering choices. These are tips for planning with Pompe;
Financial planning
ERT at home or hospital
Deciding when to change treatment
Tips for caregivers
Maximising your Dr's appointments
How to build your care team.
#PompeDisease
pompediseasenews.com/pompe-pathwaysβ¦