Hobden Family: MND Medical & Memories Fund
Donation protected
Hi Everyone
As many of you know, in June the Hobden family were hit with the devastating news that Hobbo/Ron/Brad was diagnosed with Motor Neurone Disease – Progressive Bulbar Palsy (MND – PBP).
PBP is a brutal disease with no current cure. It first attacks the lower motor neurons connected to the brain stem (the bulbar region), which controls the muscles needed for swallowing, speaking, chewing, and other functions. PBP is also devastatingly the most aggressive form of motor neurone disease and has a life expectancy of just 6 months to 3 years.
Unfortunately, Hobbo has already begun to experience some of these impacts with his speech wavering, and he is finding it more difficult to project his voice. He now needs to wear a voice amplifier when in noisy environments and crowds. He has also started losing his balance and strength in his left arm as the muscle atrophy starts. The disease will also move to the upper motor neurons which will impact Hobbo’s ability to use his arms and legs. The ultimate impact of the disease will mean that Hobbo experiences complete paralysis without being able to move unassisted, and will need to be fed through a percutaneous endoscopic gastrostomy (PEG) tube requiring complex, intensive full-time care.
One of the most devastating parts of the disease, and what scares Hobbo the most, is that he will not lose his other senses. This means he will be cognitively clear and will be completely aware of his deterioration and inability to play with Lizzie and Henry, and to hug Anna-Louise/Annie.
As difficult as it is to share all of this with everyone, and for you to read it, this is the brutal reality of this disease. It is obviously an incredibly frightening prospect for Hobbo, and everyone who loves him, to understand what this disease will inevitably do.
As you can understand, this has meant a huge amount of rapid decision-making to work out the next steps for the Hobden family: juggling the realities of Hobbo’s medical needs as well as wanting to make the most of the time they have left together.
At the moment, they have two clear priorities for the money raised by this GoFund Me campaign:
1. Creating memories for Lizzie and Henry as a family together, including travel, while they can and while Hobbo is able to.
2. Getting access to the best healthcare. This includes an experimental drug from Japan called Edaravone, recommended by their specialist at the Brain Mind Centre in Sydney.
This drug has shown great results in slowing down the progression of MND in patients who have been diagnosed early, which fortunately is the case for Hobbo. It is not yet available in Australia and to get access to the drug the family need to travel to Japan for 3 weeks to check Hobbo’s suitability and start the treatment. He will also need to be monitored for several weeks for any side effects. The drug costs about $5,000 per month and they will look to bring a 6 month supply home to Australia.
The costs for Hobbo’s treatment and ongoing care are simply beyond the family’s financial means. Beyond this trip to Japan, this diagnosis will also require them to relocate to Sydney from their Gunnedah home. This also comes at a significant cost to allow Hobbo to access the specialists and allied health professionals he needs for his condition.
Some items will be covered by insurance, but many will not. Some of the upcoming costs are listed below (however this is just the start of the ongoing journey towards full time end of life care):
- Medication (12 months): $60,000
- Accommodation costs: $10,000
- Medical equipment (ventilator, wheelchair and eye gaze communication tool): $50,000
- Other medical costs (speech pathologist, Occupational therapist, Physiotherapist, Psychologist, Neurologist): $10,000
- Relocation costs: $25,000. The list will just get longer and longer.
Many of their friends and family have asked how they can help the Hobdens, and this is really the help that they need to take as much pressure off what is a completely devastating situation.
While the initial diagnosis has been incredibly hard on all of the family, for Lizzie (aged 3) and Henry (aged 1), it is a very hard and confusing time. They don’t fully understand why Daddy can’t throw them in the air and play with them like he used to, or why he is losing his voice and can’t read to them anymore. They are also not able to understand all the upheaval and changes in their life.
For Anna-Louise/Annie, she is losing the love of her life and her devoted life partner. She adores Hobbo. They have essentially grown up together, sharing 16.5 years of love, happiness, and adventures. The thought of one of them without the other seems unimaginable to all of us.
Anna-Louise and Hobbo are living a life of heartbreak, mourning a life lost and their hopes and dreams for the future. They used to speak about their hopes for travel, career growth, retirement, being grandparents, and the day-to-day joys of watching their children grow into the people they will become.
They are having to rewrite their futures now. They are dealing with the realisation of not only what Hobbo will miss, but what Lizzie and Henry will miss out on by not having their MVP/Dad around (and as we all know, he is the most incredible, patient, loving, fun father). And for Anna-Louise, the knowledge of having to navigate life and raise their children without Hobbo is both devastating and terrifying.
Through all of this, they are staying as positive as they can. They have a fantastic support network with all their friends and family rallying around them as soon as they could. Naturally, they are taking it day by day and trying to make the most of whatever time they have left together as a family.
As so many of us have experienced, Hobbo and Anna-Louise have been there to help others without anyone asking.
It would mean the world to us, and them, if we can support the Hobdens in creating beautiful memories and accessing the best healthcare to keep the wonderful Hobbo well and with us for as long as possible.
Please donate if you can, and share with your networks too.
For more information about MND PBP you can head to:
Thank you so much for your support.
No amount is too small to show our love and support for Hobbo, Anna-Louise, Lizzie and Henry ❤️
Organizer and beneficiary
Leah Hill
Organizer
Kiama Downs NSW
Anna-Louise Hobden
Beneficiary