Help Debbi get a transplant and thrive

When Debbi was 6 or 7, her big sister and brother took her to the Speedway to watch the rally cars. While the older kids predicted the winners and cheered their favourites on, Debbi could not: her favourite changed throughout the race - to whoever was losing. Debbi chose the underdog.

And this is how I know Debbi – as a person who makes space for others, listens, lends a hand when necessary, leads when needed, brings people up… works for fairness, fights for justice.

I first met Debbi in 2012. Both involved in community and loving food, we got together to discuss some volunteer catering we could do for an event. Then I saw how tirelessly Debbi committed herself to organising big kitchens, helping people be housed, supporting families in crisis, driving people around, engaging in political action and community advocacy, all while raising kids of her own - often on her own - and studying, working and living with Ehlers Danlos syndrome– and other chronic and debilitating physical challenges. What a powerhouse!

Debbi was in the pre-op theatre for spinal fusion surgery, when they found her bloods were wrong. The diagnosis: MDS-EB2 (Myelodysplastic syndrome with excess blasts-2) a rare form of blood cancer that can turn into Acute Myeloid Leukemia (AML).

Debbi was born and grown on Jagera and Quandamooka country and identifies as a proud Brisbane Black, now living on Turrbal country. She has 5 kids (ranging from 12-32). She has cared for people all her life as an educator, an aged care worker, a disability advocate, and a community activist.

While I heard quietly of physical struggles she was facing I never realised that she was living not just with Elhers Danlos, but also Fibromyalgia, Lupus, Dysautonomia and POTS. This means she experiences cranio-cervical instability (looseness where the neck and head connect), frequent bone dislocations, fragile tissues, teeth and gum problems, neuropathy (lack of sensation in hands and feet), an erratic digestive system, chronic hypothermia in winter and hyperthermia in summer, and chronic low blood pressure leading to black outs, dizziness and heart-attack like symptoms, a weakened immune system and chronic pain.

When she was younger, (lacking clear diagnoses) and unaware that her conditions were progressive and degenerative, after every dislocation, injury, dislocation or setback, she would rise and carry on.

Debbi now uses a wheelchair, no longer drives, spends significant times in hospital and needs support with some of her day to day activities. For the past 18 months, Debbi has be receiving monthly chemotherapy. The physical and financial costs are taking their toll and Debbi is struggling. While the NDIS has provided her some support, it has run out - failing to keep up with her changing circumstances, increasing needs, and cancer diagnosis and progression.

The good news is that a bone marrow donor has been found in Brazil and Debbi is hoping to get a bone marrow transplant in August. All going well, she will spend six weeks in hospital in recovery and rehabilitation and then be sent home, where she will require at least 100 days of additional at-home support to manage the complications from the transplant.

We are hoping that Debbi’s body will accept the donor marrow and she will soon become healthy enough to return to treatment for her neck, head and beyond! In the meantime, she could really use our support.

Some of the things she could use our help with are:

• Funding dental work prior to her operation

• Fixing, getting rid of mould and repairs to her on-site caravan – a space where 24/7 support workers will stay when looking after her

• Healthy meals that meet her complex dietary requirements – or a service that could provide them

• Fixing her car to provide transport for Debbi, her kids or carers

• Repairing her washing machine to help with extra laundry needs

• Supporting professional home cleaning and sterilisation for Debbi’s return home from hospital

If would like to contribute, but are unable to support financially, please follow our campaign, send good energy and wishes and as Debbi says “be the light your own community.” If there are services or tasks you would like to offer, please contact us directly.

Debbi has identified a new passion and goal for when she recovers. Noting the lack of accommodation for wheelchairs and other complexities of access to healthcare and support, Debbi has committed to being an advocate for diversity and disability support in the cancer space.

Debbi gives so much to our community! I hope you will join me in giving a bit back to to her!