Update from National Patient Safety Office Children's Health Ireland currently have one Halo Gravity Traction Wheelchair in use under a rental agreement. 19m allocated Stephen Donnelly and we have only 1 Halo Traction chair which is rented. How can we expect our children’s surgeons to work in such conditions.

Hypermobile Ehler Danlos Syndrome (hEDS) isn’t just a person being ‘too flexy bendy’. It’s multisystemic. It’s joints, connective tissue, gynaecology, gastroenterology, cardiology, dermatology…. It affects every aspect of the body where Collagen, Fibrin and Fascia interact.

Yesterday was just a horrible and hard day. We were looking at a child that for the first time in this scoliosis journey is unable to eat without feeling sick immediately (she had 2 small pieces of chicken). We are physically and mentally exhausted and damaged by a failed

“Not everyone knows that sepsis is the most common avoidable cause of death in children." Nuala Clarke, National Sepsis Team, CHI shares advice on the signs and symptoms to watch out for. #Sepsis

My husband and I really worry about two things: 1. The rapid progression of Anallas scoliosis. A surgery at 50-60° is a heck of a lot safer than one heading towards 80° with compromised lung function. We have no official date and are heading into winter bed shortage season for

You never change things by fighting the existing reality. To change something, build a new model that makes the existing model obsolete. —Buckminster Fuller, architect, systems theorist, designer and futurist #DF24

Today myself and Analla attended an appointment in Crumlin. It was linked more to her hypermobile Ehler Danlos Syndrome (hEDS) than her scoliosis, but it was to tidy off any concerns that there would be a vascular element to Anallas EDS. We attended because

The symptoms of ovarian cancer can be difficult to recognise, particularly early on. Know the signs of ovarian cancer and if you notice anything unusual contact your GP. ➡️ bit.ly/3BcxJBC #KnowTheSigns | #OvarianCancer

Note: not scoliosis related but thought I would share 🙂 Us, and our daughter, are having a pretty bad time of things at the moment…. So…. I am sharing good news with the universe as it is seldom in our house. Our daughter and son’s unofficial therapy dog Ben had to be put

So even if you are outsourced for scoliosis surgery, you cannot get travel insurance for your child?

Introducing….Noodles. Our children’s new best friend and ‘therapy pet’ A golden retriever x poodle (F1 golden doodle) It’s been two hard ‘bad pain days’ for Analla. All our hearts needed Noodles to arrive 🥰

Seems like Australia is no different to Ireland.

I haven’t been able to post any updates as I processed the reality of news from last week. The breathlessness and pain that Analla is now experiencing a lot is due to iliocostal friction. Basically, her curve is now so pronounced that her ribs on the right are rubbing and

Further deterioration in 3 months. Two floating ribs are now overlapped and pointing up towards her right lung. Her lowest rib gets caught on her hip bone (iliocostal impingement) Her natural spinal curve at her chest at the back has persistently flattened which means her

3 children have waited more than 3 years for spinal surgery with 27 kids waiting over 1 year. CHI finally publishes some time band data on how long children have been waiting for spinal surgeries. thesun.ie/health/1405421…

Anaesthetics appointment complete (called with last minute with a cancellation). Not restricted by needing an ICU bed thankfully. Last hurdle done. Next step Spinal fusion Surgery for Analla. My adrenaline is all we are functioning on for this surgery for our daughter.

Visual evidence and images are statements of fact. They are not subject to personal opinion or clinical perspective. There is more than 1 degree of thoracic curve progression between the two whole spine X rays shown below; despite what we have been told. In the last 44 days