Support for Henry and his family
Donation protected
On Easter Monday we took our baby to hospital with what we thought was dehydration from teething, within the space of a few hours, Henry was medically sedated, with a tube down his throat to breathe and being retrieved by the Royal Children’s Hospital PIPER team, we were flown to the RCH rosella ward (intensive care unit) where Henry underwent thorough testing and treatment.
Henry has been diagnosed with atypical haemolytic uremic syndrome (aHUS) which is a very rare disease effecting 1 in 5,000,000 people. Henry will be receiving fortnightly treatment at Royal Children’s hospital for the foreseeable future, he will most likely require this treatment for the rest of his life.
Henry also lives with x linked stapes gusher syndrome, this means that Henry is profoundly Deaf, with an atypical shaped cochlear, we are currently in the process of testing for eligibility of a cochlear implant. Both of these illnesses have caused a great impact to Henry’s and our lives.
After just securing a new job 4 weeks ago I am now unable to take on much work outside of the home due to Henry’s medical needs. We will be attending appointments locally 3-4 times a week as well as fortnightly Melbourne trips, we do have access to Ronald MacDonald house (pending availability) and IPTAAS to assist us with reimbursing a portion of the costs of the Melbourne trips but moving forward relying on one income is going to be tough, especially with Craig needing to take so much leave to be here with us in the hospital as well. we really don’t like asking for help but we are seeking some support financially to assist us with care for Henry as well as food and accommodation for us when we are with him in Melbourne and also to ease the pressure of our living expenses whilst we come to terms with our new normal.
It takes a village to raise a baby and I’m so grateful for all of the support our family and friends are able to provide us ❤️
Henry has been diagnosed with atypical haemolytic uremic syndrome (aHUS) which is a very rare disease effecting 1 in 5,000,000 people. Henry will be receiving fortnightly treatment at Royal Children’s hospital for the foreseeable future, he will most likely require this treatment for the rest of his life.
Henry also lives with x linked stapes gusher syndrome, this means that Henry is profoundly Deaf, with an atypical shaped cochlear, we are currently in the process of testing for eligibility of a cochlear implant. Both of these illnesses have caused a great impact to Henry’s and our lives.
After just securing a new job 4 weeks ago I am now unable to take on much work outside of the home due to Henry’s medical needs. We will be attending appointments locally 3-4 times a week as well as fortnightly Melbourne trips, we do have access to Ronald MacDonald house (pending availability) and IPTAAS to assist us with reimbursing a portion of the costs of the Melbourne trips but moving forward relying on one income is going to be tough, especially with Craig needing to take so much leave to be here with us in the hospital as well. we really don’t like asking for help but we are seeking some support financially to assist us with care for Henry as well as food and accommodation for us when we are with him in Melbourne and also to ease the pressure of our living expenses whilst we come to terms with our new normal.
It takes a village to raise a baby and I’m so grateful for all of the support our family and friends are able to provide us ❤️
Organizer
Melissa Norton
Organizer
New South Wales
