An update on Ryder

Michelle and Brock live in Clarks Beach with their three children, Chase, Ryder,

and Harper. Unlike any other “ordinary” family they are managing three chronic

health conditions with their son’s Chase (age 8) and Ryder (age 5)

In 2016, when Chase was just 1 year old, he went home from daycare one day

feeling unwell and vomiting. Michelle decided to take him to A&E, only to quickly

learn that his blood sugar was thirty-seven and he was likely a Type 1 diabetic.

Normal blood sugars should be between 4 and 7.

With instructions to drive straight to starship the family got in the car and Chase

then began losing consciousness on the drive there. When they arrived, he was

taken straight to ICU and put on an intravenous insulin drip. Chase was in

Diabetic Ketoacidosis, which is a life-threatening condition from undiagnosed

diabetes.

Chase now lives with an insulin pump and his blood sugars are monitored using

a continuous Glucose monitor which he wears on his arm.

Fast forward to 2023, and Ryder aged four at the time was also diagnosed with

Type 1 diabetes. Ryder now also lives with an insulin pump and Continuous

glucose monitor on his arm. (Kiwis Together were able to fund this in 2023)

Type 1 diabetes does not run in the family, so to have two children develop this

condition is extremely rare and unfortunate.

There is a lot involved in manging type 1 diabetes. Blood sugars need to be

checked every three hours, both day and night. Every-time the boys want to eat,

they need to have insulin administered, and insulin levels fluctuate all the time

and vary depending on many factors including the weather, sickness, and activity.

The pumps deliver insulin through a tube connected to a needle under the skin.

This needle needs to be changed every 3 days. The glucose monitor also needs

to be changed every 10 days, which is another needle in the arm.

The glucose monitors are fantastic as they prevent the need for multiple finger-

pricks to draw blood for tests. They also alarm mum and dad if the blood sugar

rises or drops below normal levels, which allows them a better night’s sleep.

Unfortunately, the glucose monitors are not currently funded by Pharmac, and so

come with a financial burden of $758 per month for both children.

In May 2024, Michelle then noticed that Ryder was walking with a limp, which

developed into leg pain. Certain there was something wrong, Michelle

took Ryder to Kids First hospital. After doing some x-ray’s and blood tests it

became likely that Ryder had something serious going on. He was then put to

sleep for an MRI scan on his right hip. The family then got the bad news that Ryder

had a condition called Perthes disease.

Perthes disease is essentially when the blood stop flowing to the head of the

femur (for a reason that is not known) and it causes it to die. Ryder’s femoral

head is ¾ dead. The good news is that the blood circulation will return in time.

Perthes Disease is debilitating. Ryder is no longer allowed to weight bear on this

leg because his hip can collapse. He now has to be confined to a

wheelchair for at least the next 12-18 months while his hip bone regenerates and

reforms.

This means he cannot walk, or run around with his friends at school, he cannot

play sports, play in playgrounds, or do any “normal” activities for a boy his age. It

is a lot to adapt to for a 5-year-old active little boy.

It is highly likely that after Ryder’s femoral head grows back (which might take

years) that he will still need surgery to reshape the head into a ball and keep it in

the socket. Ryder is almost certain to need a hip replacement at an early age.

Ryder is encouraged to do some non-weight bearing activities including riding

his bike and swimming, so the family have enrolled him in twice weekly

swimming lessons to help keep good range of movement in his leg and so he

also does not loose muscle mass from being in his wheelchair.

These health conditions are a huge burden for a young family. Both parents work

full-time, and are managing the best they can.

Whilst Kiwis Together can’t change the course of action for Perthes Disease, we can assist with further funding for the

glucose monitors in the absence of Pharmac funding. Pharmac are expected to fund these monitors in 2024.