Be Brave... Walk for Tommy

We have decided to update our page as it has been 3 years since we began fundraising for Tommy. We have made a few changes to our fundraiser and these are reflected in our update below.

In April this year, Neil Cowe and I will be trekking the Kokoda track to raise funds and awareness for the Lymphangiomatosis and Gorham’s Disease Alliance (LGDA). In 2015 my son Tom was first diagnosed with Chiari Malformation, a condition which causes the brain to herniate and place pressure on the spinal cord. Tom had major brain surgery in November 2015 to relieve the pressure and make some space around the herniation and hopefully relieve his symptoms. Shortly after the surgery Tom became very ill and suffered his first case of meningitis. Admissions in and out of hospital would be the recurring theme for us over the next few years as he suffered from a further 3 bouts of meningitis. Eventually after nearly 2 years of tests and treatments Tom was finally diagnosed with Lymphangiomatosis and Gorham Stout Disease (GSD), an incredibly rare set of diseases that affects the Lymphatic system and subsequently, the organs and bones (which is also possibly the reason he has Chiari Malformation). In 2019 the pain from his disease had become unbearable and he was suffering on a daily basis so we made the very difficult decision to put Tom through radiation treatment. The radiation targeted the back of his skull and neck where the lesions from the GSD were the worst. The 5 weeks of intense radiation finished in August of that year and was considered a success as the lesions have stayed stabilised and not grown any further. Unfortunately for Tommy the radiation caused him to have issues with his digestive system and eating, which resulted in him battling an eating disorder for 12 months, where he lost a third of his bodyweight. Through the help of the hospital and counselling we managed to get Tommy back on track and back to being a normal hungry little man which is how he is now. The diseases are currently stable, and we are hoping that this will remain the same for Tommy as he goes through high school. It’s nice to see a smile on his face again and it is heartening to know that he is not in as much pain. We can only hope that his ongoing treatment and medications keeps the diseases at bay for as long as possible.

Lymphangiomatosis is characterized by lymphatic malformations involving soft tissues, bones, and organs such as the spleen (Tommy has lesions in his spleen) with disease present in more than one location in the body. Gorham’s (also known as bone vanishing disease) is characterised by progressive loss of the hard outer surface (cortex) of the bone. GSD can progress rapidly but can also spontaneously stabilise (Tommy is currently stable). It typically extends beyond the original site of disease, involving nearby bones, and is much more common in the head, neck, back and chest (axial skeleton), Tommy has it in his head, neck, spine, hips, legs and feet.

As the diseases are so rare and only affect a few hundred people worldwide, funding to try and find a cure is limited. Finding the right diagnosis and appropriate treatment is also a challenge for these diseases due to their rarity. That is why Neil and I want to trek through the jungles of Papua New Guinea to help raise awareness, raise some money for the LGDA and Tommy's ongoing treatment and hopefully, one day help be a part of the cure for these horrible diseases.

Many thanks to IGT Australia for sponsoring the Walk.

Follow our Journey to Kokoda on our blog site:  http://walkfortommy.travel.blog/

Beneficiary of this Campaign: Harry Harborne

All payments are final and cannot be refunded.