1/ My son requires 24 hr care. He has a severe/profound ID, he is a wheelchair user, he is tube fed around the clock, he requires a huge amt of meds daily, injections, infusions & inhalers/ nebulisers. He requires oxygen at times. He needs me for EVERYTHING. I need the vaccine.
3/ He has painful arthritis since he was a little baby. It’s very difficult to manage. He is on biologic drugs, steroids, pain relief three times daily. He is often in such terrible pain but is non verbal so can’t say. #ForgottenFrontline
5/ Nebulisers & oxygen are part of Jack’s life: he has chronic lung disease & requires further open heart surgery, he is immunosuppressed. He is so vulnerable. #VaccinateCarers#ForgottenFrontline
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@DonnellyStephen@AnneRabbitte@rodericogorman@paulreiddublin I have written to you all about lack of access to Paediatric Rheumatology. I am hoping you will meet with me to discuss. My letter details how children with Down Syndrome have been let down by the health system. 1/
I learned today that the waiting list for a Paediatric Rheumatology appt is now 4 YEARS long not 3 as I said in my letter. It is a year long wait if parents opt to go privately. Most are forced. This is NOT acceptable. @CMRF_Crumlin@DownSyndromeIRL@Arthritisie@iCANIreland 2/
I am begging for a meeting with the Minister for Health for a long time. When is it going to be @DonnellyStephen ? This is URGENT! @OCO_ireland I have also written to the Ombudsman for children. 1 in 50 children w/ Down syndrome have arthritis v’s 1 in 1,000 of the NT pop. 3/
1/ Dear selfish *******, I see you out jogging, cycling & walking. I am very conscious of the 2 metre rule which is 6 ft for those of you who don’t know. We have been cocooning for weeks on end & I only began to be able to take my extremely vulnerable son out for walks last week.
2/ We haven’t gone out every day because some days are just too busy. I live in the Countryside beside the canal which is lovely. The path at the canal is probably just about 2m wide so even with the best will in the world it is impossible to pass people allowing the 2m distance.
3/ But at least some people try. I don’t even think it’s most people, maybe 50%. Then there’s the others who are too selfish to realise that there are people who are at risk of this virus. Some of those probably think that families like mine should just stay at home. #Covid19