Fight To Help Archer & Arlo

We are Lee-Anne & Nicholas, parents to 3 beautiful kids. Paris (F) 4 years old, Archer (M) 2 years old & Arlo (M) 8 months old. 2024 was a year like no other. A year we will never forget.

We welcomed our 3rd child Arlo in April 2024. In July 2024, our world was flipped upside down. We received a phone call at 6.30am saying our 2nd child Archer had severe abnormalities identified on his blood test. We took Archer to Monash Children’s Hospital (VIC) where we learnt that his CK level was 55,414 and should be under 150. We were discharged with the plan of urgently seeing the neurology team in the next few days.

We met with the Monash Children’s Hospital Neurology team who walked us through the depths and the reality of what we would likely be facing. Based on Archers constant high CK levels, we would be looking at a condition called Duchenne Muscular Dystrophy (DMD). The next things we heard were beyond heart breaking. We were explained that it is a genetic disorder which targets all muscles of the body, including the heart, lungs and brain. Archer would be in a wheelchair by his teens and have a reduced life expectancy to his late teens to 20’s. There is no cure. DMD mostly affects boys. This was something we had never thought we would be dealing with. We had all these thoughts and ideas on how our boys would grow up, get married have kids and enjoy a happy healthy long life. The way life is meant to be.

We needed to do further genetic testing to confirm if this was the case. Archer’s bloods were sent off to determine the genetics with 4 months being the turnaround for results.

During this 4 month wait, we noticed some signs in Arlo that were of concern. We spoke with our paediatrician who performed a blood test to determine his CK levels. A few days later we received the gut-wrenching call that his CK level was also highly elevated and Arlo will likely have the same diagnosis and will need his bloods to be sent away for genetic testing.

In October 2024, we met with the Neurology team at Monash Children’s Hospital and we received the genetic test results confirming Archer & Arlo both have DMD. Our worst fears were confirmed.

We were referred to Melbourne Royal Children’s Hospital for all further appointments. In our first appointment with Royal Children’s hospital in November 2024, we received some more heart breaking news. Both Archer & Arlo have a nonsense variation of DMD which means there are no treatments or genetic trials available for the boys in Australia now and in the foreseeable future. The only treatment in Australia is steroids from age 5. Australia is quite behind in trials and treatments overall in comparison to the US & UK.

There is only one treatment currently available globally called Ataluren/Translarna which is available in Europe. Ataluren/Translarna is available for children aged 2 years and older who are walking. This treatment is not a cure, however provides boys with nonsense DMD the opportunity to prolong the need of a wheelchair giving them 2-7 years of additional walking time and slow the progression giving many years of additional independence.

We are so disappointed in the response Australia has taken for this treatment by not making it available here after many opportunities to do so. We could get the medication imported but we would be looking at over $100,000 per year and the boys would be on this medication for likely 10+ years over $1,000,000. Due to it not being approved in Australia there is no subsidy for the medication. Some families were lucky to be apart of the trial giving them special access to this medication. But so many families like us are stuck feeling helpless. We desperately want to save our sons and give them the best quality of life we can.

With careful consideration and research, England has the most stability with the treatment and would be the most viable option. This is priceless to our boy’s quality of life. Moving to England will be challenging in itself. We have no family or close friends in England and will be leaving behind everything to start a whole new life in another country we have never even been to. It sounds crazy, but we are willing to do anything we can to show our boys we tried everything to give them the best life possible.

We are setting up this go fund me to assist us with the astronomical cost to relocate our family to the UK. In just visa fees and the immigration health surcharge (IHS) for 5 years for the 5 of us we are looking at over $70,000. This doesn’t include flights or living costs.

Financially this is a lot but in the long run, this would save us hundreds of thousands of dollars and provide our boys with the best chance of a better quality of life than what Australia can provide.

We understand that these times are trying and hard for everyone. We completely understand not everyone is in a position to help our family out. We will be so grateful for any contribution that can be made or even sharing our go fund me hopes we can raise these funds to give our boys a quality of life they deserve.

We thank you in advance for your support!