Help Elias and Huxley enjoy their daddy for a little while

Hi, I am Angela's mum and nan to Elias (7 years) and Huxley (5 years). I've started this fundraiser because my son-in-law Aaron (41 years old) has Young Onset Parkinson's Disease that was diagnosed in 2018 when he was just 34 years old. The last six years have been an ongoing struggle for Angela and Aaron, with Aaron's condition deteriorating aggressively since diagnosis. Parkinson's Disease is a chronic, degenerative condition with no known cure. Parkinsons has cast a dark shadow over all our lives, robbing Aaron of his mobility, independence, and autonomy. We have felt increasingly hopeless as Aaron's condition has progressed, watching him lose the ability to be a hands-on dad to his young boys and becoming a bystander in his own life - watching it pass him by but unable to participate in it. I have seen Aaron go from being a larger-than-life personality to a frail frame and limited quality of life. It is very sad for Huxley and Elias as Daddy rarely leaves the house or his room. We hope that this treatment will give him some quality of life, it is hard for my daughter as she is a mother and father to her children and the carer of an adult child for all practical purposes as he is 100% dependent on her and on other people. All while she mourns the loss of her relationship with her husband as it evolves from partners in life to carers and dependents. Given Angela and Aaron had only been married a few short years before Aaron was struck down by Parkinson's, they were robbed of their dreams.

Recently, we have found a treatment option that has given us cause for hope for the first time in a long time. Although not a cure, this treatment may help to manage some of Aaron's more intrusive Parkinson's symptoms and give him back some quality of life, potentially allowing him to be an engaged father to his sons. This specialized and expensive medical treatment is called MRI-guided Focused Ultrasound (MRgFUS) pallidothalamic tractotomy (PTT) and is not currently available in QLD where we live - Aaron and Angela would need to travel to Victoria for treatment.

Angela now has to wear many hats to support her family, both as Aaron's wife and carer while also working full time and being the primary parent to Elias and Huxley due to Aaron's advanced disability. Angela and Aaron were married in late 2013, barely being married for a year before the first symptoms of his disease presented in 2015. Initially put down to nerve damage from a prior injury, Aaron and Angela's world was turned upside down when Aaron was ultimately diagnosed with Young Onset PD in early 2018. At the time Elias was only 10 months old and Angela was pregnant with Huxley.

Since diagnosis in 2018, Aaron has become almost immobile and can not interact with his children in a way that a young dad would, he can not go and watch Elias play footy or practice with him and Huxley has never known the simple pleasures of being able to play with daddy, as Parkinson's Disease had stolen Aaron's ability to play with his boys by the time Huxley could walk. MRgFUS PTT is a newer treatment, but, has promising results in reducing tremors and improving mobility in Parkinson's patients. If successfully treated, this could mean that Elias and Huxley get to have a little bit of their dad back. Before Parkinson's, Aaron was considered by those who knew him as a genuine, fun-loving, hardworking, family guy. He was always there to lend a helping hand, he was reliable, stubborn, honest, and a loyal friend, but, most of all, a devoted husband and father.

My daughter Angela struggles every day, working full time, essentially being a single parent and the carer of an almost fully immobile husband. Due to Aaron's advanced disability, he needs Angela's help with many aspects of his life and functioning. Aaron has applied for support through the NDIS but his access request has not yet been assessed despite being submitted approximately 6 months ago. My husband and I help where we can, but, Angela and Aaron need much more help than we can give. The expense of specialists and medications for Aaron is very high, this is why I am asking for your help. The best treatment option for Aaron based on his circumstances is a treatment that is not funded by Medicare in Australia. The MRgFUS PTT has completed the clinical trials overseas and had promising results, however is a relatively new treatment in Australia, costing upwards of $45,000.00 for treatment and hospital stay. This does not include specialist appointments, follow-up treatments, and so on.

Angela is now the sole breadwinner as Aaron has not worked for more than 12 months due to the advanced stages of his disability, if it were not for COVID-19 and the ability to work from home in that time he would have finished work much earlier. Aaron no longer holds a driver’s license, so Angela needs to take time off work to take him to appointments.

They have had to purchase multiple mobility aids (wheelchair, walker, walking sticks) but none of these things improve mobility significantly meaning, a lot of support is still needed from other people to mobilize around the home. At this point, Aaron is almost unable to go outside of the home. Trips to the doctor, neurologist, etc., take a lot of planning and a great deal of effort and completely exhaust Aaron leaving him in pain.

This young family has lost so much already, the dream of ever owning a home or traveling for this family has been ripped out of their reach. The simple pleasure of a holiday has even become a wishful thought, as the expense of taking a holiday is not even in the realm of possibility, With mounting living expenses due to Aaron's specialized dietary requirements not to mention the cost of medications, and treatments amounting to approximately $300 per month, that does not even include the cost of medical and specialist appointment's and loss of wages.

I know that everyone is struggling and asking people to stretch themselves is added pressure, however, I am asking that many people give a little to make a family’s life a little easier and give two little boys the chance to enjoy their dad for a little while. MRI-Guided Focused Ultrasound (MRgFUS) is a cutting-edge, non-invasive medical procedure used primarily to treat essential tremor, tremor-dominant Parkinson’s disease, various other types of tremor, and also certain types of chronic pain.

MRgFUS PTT (not to be confused with the Medicare-funded MRgFUS ) is a revolutionary treatment that frequently offers immediate relief or significant symptom improvement in most patients after a single treatment session. The procedure utilizes focused ultrasound waves that can penetrate the skull without any incisions or drilling. MRgFUS PTT is performed with the patient awake to assess the potential benefits and rule out side effects through a non-permanent “test lesion,” ensuring it is both safe and reliable. While there are no guarantees it is the first time in a long time that Aaron and Angela have had a bit of hope for some normality for their family. MRgFUS PTT has had great results overseas but is yet to be endorsed by TGA in Australia and therefore not covered by Medicare or Private health coverage in Australia.

If you can help even a little to go towards this procedure and the ongoing expenses they will face, we will be ever so grateful and you will help make two little boys so happy for the chance to play with their daddy.

I thank you for your contribution in Advance on behalf of Angela and Aaron

Angela's mum Karen