Support the family during Tommy's complex recovery.
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This GoFundMe has been set up to directly help Tiffany (Tiff) Arrow, who is the mother of Tommy. All funds donated will go directly to Tiff.
Tommy has a complex medical history which has required his mum Tiff, who is a single parent, to take multiple days off her paid employment as a nurse, to care for him or attend medical interventions. Tommy has recently been diagnosed with ‘Chiari’ and requires extensive neurosurgery at Westmead Children’s. At a minimum Tiff will need to be in Sydney with him for a fortnight and unable to do paid work for at least 10 weeks while caring for him as he recovers.
For those of you who know Tommy, his brother Harry or his amazing mum Tiff, you are probably aware of the incredibly tough journey they have experienced in striving to keep Tommy in good health.
For lack of a better explanation, the simplest way for Tiff to explain the complex issue to people is, “Tommy has seizures”, though Tiff has known for a long time that something simply wasn’t making sense and it didn’t seem like ‘normal epilepsy’.
As a baby, Tommy had multiple absent seizures and there were concerns about muscle tone in his neck and left foot. When he was seven months old, Tiff witnessed his first tonic clonic seizure (convulsions). During the pandemic and up until he was two years old, Tommy was hospitalised multiple times for tonic clonic seizures as well as complications from Covid, Influenza and RSV. In 2022 Tommy and Tiff experienced one of the most terrifying times in Tiff’s life, when Tommy stopped breathing during a seizure and required resuscitation, which Tiff administered until assistance arrived. His little body was struggling with something, it just wasn’t clear what.
Through 2024 Tommy’s symptoms have significantly worsened, and the ‘normal’ epilepsy medications just aren't doing what they need to keep on top of it. Tommy has been having 2-4 seizures a week. Tommy’s exuberant spirit has been tempered with crippling migraines. He has periods of absent staring, a decline in his speech and general cognitive functioning, as well as impacts on his physical capacity, such as ‘foot drop’, which means he is having trouble lifting his left foot.
On 10 July 2024 Tommy underwent an investigative MRI and the amazing team at Westmead Neurology have made the life changing diagnosis of Arnold Chiari Malformation Type 1 (‘Chiari’).
What is Chiari? For those with an interest in brain science and anatomy: Many people who have Chiari have no symptoms. Often Chiari doesn't become evident until teens, however Tom has been unlucky. Tommy’s Chiari is very severe. Tommy’s cerebral tonsils are below the foreman magnum. He has a herniation which is at least 15mm, however the lead Neurologist suspects it is bigger and expects to upgrade the diagnosis to Chiari Malformation 1.5. Usually ,a herniation of 5mm is considered critical, and Tommy’s is triple this. His treatment requirements are extensive.
What now? There is no cure for Chiari, but it can be surgically managed in an attempt to bring Tommy some relief of symptoms and allow him to experience a relatively normal life. Tommy requires the surgery as soon as practical, otherwise Tommy’s condition will be fatal; or at best, he will lose use of his limbs and become a quadriplegic.
The admission: Tommy will be admitted to Westmead Children’s Hospital from 10/10/24. He will spend five days in a special ward to monitor his seizures and brain activity generally. Tommy will then proceed to surgery on 15/10/24. The operation is not simple (I’m sure you wouldn’t expect it to be!) and there is more detail below for those who wish to know. Afterwards, Tommy will be placed in an induced coma for at least four days. He is then expected to remain at Westmead hospital for at least 7-10 days before discharge.
Recovery: Tommy’s recovery period is expected to be at least 12 weeks of challenges. He may be discharged home, but possibly to a smaller, less critical ward in Bathurst. He will require extensive rehabilitation, with physiotherapy 2-3 times per week. It is expected he will return developmentally to a young toddler and there will be a lot of pain. He will need to learn how to drink and eat, walk, run and play all over again. His mum will need to be with him through this. With how sick Tommy has been over the last couple of years, Tiff’s leave entitlements at work will fast run out, and she needs our help to reduce the impact of stress on the household recovery.
Tommy’s brother, Harry, will be staying with his maternal grandparents throughout. Harry is in Kindergarten and has been loving school and needs as much normalcy as possible. Tiff’s parents are amazing – they (and Tiff!) have faced their own challenges in the last 6 months. Their perseverance and resilience in supporting the kids and Tiff has been amazing.
The dream is that with treatment, Tommy will have relief from his symptoms and go on to live a relatively normal life. Please help Tiff keep things as stress free and normal as possible for Tommy, Harry and herself during this time.
For those who wish to know a little more…
[From Tiff’s understanding from consultations with neuro team]: Treatment is Chiari decompression with craniectomy and laminectomy of c1 and c2. They then cover area with dura patch. (Removal of part of skull and c1 and c2 ) this will restore flow of CSF, reduce pressure and Tom should return to normal function in 8-10 months.
Organizer and beneficiary
Jayne Sanson
Organizer
Bathurst, NSW
Tiffany Arrow
Beneficiary