Help for hirschsprung disease in Ashfield, New South Wales | Community

Help for hirschsprung disease

Locality: Ashfield, New South Wales

Address: Po Box 776 2131 Ashfield, NSW, Australia

Website: http://www.help4hd.org.au

Likes: 2615

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25.01.2022 BABY BRAXXTON Posted @withregram @brittanyleone ... Hirschsprung’s disease is not an easy ride for any child but for ours this is our 4th admission in 6.5months! Although not each time has been due to being physically ill it still breaks my heart as a mother to see one of my children go through so much beyond what a child his age should be going through #hirschsprungsdisease #kidsgutsthatdontwork #HD #imoneinfivethousand #enterocolitis #hirschsprungs #hirschsprungsdisease #melbourne #childrenshospital #victoria #bowelclinic #hospital See more

21.01.2022 I am so proud of my gorgeous boy George for completing two full days of basketball @myhoopsbballaus training today!!! The last two days George has been at @myhoopsbballaus at @sydolympicpark he absolutely loves basket ball and his amazing coaches !! For George this is a big deal to have completed two full days of sports, having Hirschsprung’s and a shorter large bowel means he gets dehydrated quicker, the body doesn’t absorb as much nutrients causing muscle aches and... pains & fatigue (lack of iron) and his digestive issues make him feel extremely nauseas whilst playing. No sphincter at the end of his esophagus and a loose stomach opening means it’s very easy for bile and stomach acids / juices to come up making him feel really sick and extremely uncomfortable. He also has to deal with leakage from his stoma so he always has to change bandage mid training. Lots of stopping and starting ...these are just the physical challenges, there is also the psychological challenges....but with the help of his amazing coaches he persevered and completed it and he feels so good that he did. Completing these two full active days means he’s out of action at night so any other commitments he has just can’t happen, he simply feels too sick to go. We are so proud of you George, we know it’s not easy but you deserve to have the same opportunities in life that other children do Some sports can be so challenging for our kiddies. What are some issues you have found challenging? Please share I’d love to hear your stories. Next we have school camp coming up and I have to say the more I think about it the more anxiety and fear I have, the thoughts run through my head .... ‘what if this happens? What if that happens?’ It never stops #basketball #training #invisibleillness #hirschsprungsdisease #sydney #myhoops #brothers #stoma #reflux #stomachacid #esophagus #esophagealspasms #bile #boweldisease #irondeficiency

21.01.2022 Heaths’s Appendicostomy surgery all done and now cuddles Buddee Bear @kaylareneela_ This is Heath he is 4 years old and on Tuesday finally got his MACE to help with his bowel issues... Heath has a rare chromosome deletion so they aren't sure if that's why his bowels "simply don't work" this is step one of a bigger picture to eventually resect a part of his bowel to hopefully give him 'normal' function in a few years time #boweldisease #bowelsdontworkright #surgeryday#appendicostomy #sydney #boy #washouts #flush #stomalnurse #hirschsprungsdisease #buddeebear #stomadoll #stomabear #button

19.01.2022 MEDICAL ALERT CARDS Help for Hirschsprung Disease produced these medical alert cards in conjunction with the neonatal surgical bowel clinic @sydney_kids a few years back. They have been a real game changer !! ... These cards are free , for anyone who would like some cards please email : [email protected] Please include your full names and address. We will ship AUSTRALIA WIDE. #enterocolitis #medicalalert #medicalalertcard #hirschsprungdisease #boweldisease #neonatal #surgical #bowelclinic #sydney #australiawide #free #jeremiah2911

13.01.2022 Told he would never leave hospital ! . . We have been following Doms story for four years now and to see how far he has come is incredibly inspiring ,Domenic is a true fighter. ( swipe through to see his journey) ... @lauren.cappello - Dom has comes such a long way and soon he’ll be nearly 5 years old We were told he’d never come home from hospital but here we are getting ready to go to Kindergarten! We haven’t had a hospital admission for nearly 18 months and he’s slowly learning more words and trying to communicate with us and his friends. His daycare has been such a huge part the last two years, they really have become family to us. We couldn’t be more proud of this kiddo and how amazingly strong he is He still has his central line for TPN and his ileostomy, but we wouldn’t change him or his accessories for the world! #hirschsprungs #hirschsprungdisease #tpn #fighter #inspiring #colostomy #stoma #sydney #boweldisease #boy #warrior #inspiration #childrenshospital #stoma #buddeebear

12.01.2022 ADELINE @erinporritt we just love it when you share your carepack photos with us !!!! .... . . . . #hirschsprungdisease #carepackage #baby #balloons #cap #boweldisease #share #hirschsprungs #merch #jeremiah2911 See more