After being diagnosed with Mucopolysaccharidosis, or MPS, a disorder which affects the major organs, bones and connective tissue, Henley required a lifesaving bone marrow transplant in June of 2020.

The marrow was donated by his big brother Darcy who was three at the time.

Henley celebrated his second anniversary since the transplant on June 18, a day before he also welcomed his little brother Lenny into the world.

Now, Henley will have a couple of routine months at home before he heads to Sydney for his bilateral hip reconstruction surgeries which are set for October and November of this year.

IN OTHER NEWS:

Mother Alicia Carey said each surgery will take five to seven hours, in which they will reconstruct each hip one at a time.

"He will need to be in knee-to-nipple casts for four to six weeks after each surgery and then he will have to learn to walk again," Mrs Carey said.

"He has also had deterioration in his spine and will be fitted in a brace next week that he will need to wear most of the time."

The condition is currently incurable, but the bone marrow transplant along with the bilateral hip reconstruction surgeries give Henley the best possible chance at living a longer and happier life.

Mrs Carey said doctors say the younger the patient is when undergoing hip reconstruction surgery the better the outcome will be.

The surgery also means the family of five will have to spend weeks in Sydney while Henley recovers, but according to Mrs Carey the support they have received from services makes it easier for her and her husband to take the time off work to be by his side.

"We get support from Country Hope in terms of, if we have to go they can get us help if we need accommodation and things like that," she said.

Until the surgeries, Henley will remain attending weekly therapies.

Mrs Carey said Henley is learning and developing really well in the lead up to surgery and is loving being a big brother to Lenny while also attending daycare twice a week.

Henley will also be able to go away for a week with his family before the surgery to the Ronald McDonald Family Retreats which Mrs Carey said he is really excited for.

Mrs Carey has been sharing Henley's journey via a Facebook page titled Henley's Mission, and she will continue to post on that page for those interested in updates.

Our journalists work hard to provide local, up-to-date news to the community. This is how you can continue to access our trusted content: