Harrys world

Lovely time in cork with mammy and daddy thanks to the x

Happy Father’s Day to all the great dads 🥰

This boy loves being outside 🥰

https://www.facebook.com/share/p/sYL478tiWGQ2pWp2/?mibextid=WC7FNe

"Life as a family carer can be rewarding and joyful but it can also be really difficult. We have to fight and wait, and wait, for everything. For a diagnosis, for therapies, for assessments, for appointments, for appropriate school and adult day services. Everything we have had to do is a battle and it shouldn’t be.

"On top of these daily battles we are forced to undergo degrading financial scrutiny in order to “justify” our right to receive Carer's Allowance. Filling out that form was soul destroying, humiliating and just felt so invasive. I felt like I was begging for something that I should be entitled to… A system like this forces so many carers into poverty. It does not recognise or value the work that we do.

"Means testing causes so much stress and stigma for family carers like myself compounding the exhaustion and pain that we already feel. To add insult to injury the means test does not take into account the “cost of caring” in a household like ours. It does not allow for the cost of buying an adapted car, transport, medical expenses, special food supplements, additional heating and electricity required to run Ciara’s hoist, her electric chair… It does not recognise the hidden costs of caring and the impact it can have on our mental and physical health and well-being. We are exhausted and sick of fighting.

"I mentioned the word begging earlier on. Well here I am today begging our Government, our politicians and officials to listen and to act and abolish the means testing for Carer’s Allowance showing us that you really do recognise and value the work that we do every day."

Family carer Moira Skelly, who cares 24/7 for her daughter Ciara, addressing the Oireachtas Social Protection Committee this morning. Stream live at https://www.oireachtas.ie/en/oireachtas-tv/cr3-live/

GAA for all yesterday, soccer for all today Harry’s a busy boy 🙂 Claneafc Allinclusive

Harrys first day at GAA for all with Sallins GAA. Great day Harry loved it x

Bank holiday weekend x

Lovely morning with and . Nice catching up with a few from belmullet. Safe travels to you all and see you in belmullet in June.

Our little man is 8 🙂 Happy birthday my beautiful boy. 8 wonderful years with you. We are so so proud lots of love mammy daddy Ben & Ruby # # #

Amazing day celebrating Harry. He turns 8 on Monday and he had such a great day. Thanks to all who made it so special and the lovely gifts. he was spoilt. Thanks to maria Delaney for dressing up for the occasion 😂 and thanks to Super Smiley Parties for the amazing balloons # # #

Lovely day out with cousins x

Lovely day out 🙂

Busy day today at appointments but Harry really enjoyed all the attention. I think his sister Ruby wants to be a nurse 😂

Happy St Patrick’s day # # #

Happy Friday and hope you all have a lovely St Patrick’s weekend ☘️ x

Lovely few days 🙂

Harry’s off school today so we went to the sensory room and sensory class with Ruby at jungle den. Lovely morning 🙂

Well done to Harry’s army completing runamuck today. We are very grateful and thanks to all who have donated # # #

F1 is back. Harry and daddy are happy 😃

https://www.instagram.com/reel/CpcgzigIhXRSZG0rDDsimMS7KuXDgBU0705Dw00/?igsh=Yml0c3V1dHd0OWs5

View on Instagram From Instagram

Today is rare disease day. Harrys syndrome is very rare and is called Genitopatellar syndrome. Harry has to go through so many obstacles in his little life but is a loving happy boy and we are so lucky to have him # # #

Best of luck to all the runamuckers on Saturday especially Harrys army 💪🏻

Runamuck for Harrys world, organized by Patrick Flannery It’s that time of year again. I’m doing runamuck for my amazing nephew Harry:-) I’m looki… Patrick Flannery needs your support for Runamuck for Harrys world

https://www.facebook.com/share/p/FnMnX7fHXwWxMN9p/?mibextid=WC7FNe

Lovely weekend in celebrating Denis’s big birthday 🙂 Great hotel facilitating all the family. Happy birthday Denis we love you # # #