Alby’s Medical Bills

June 17, 2024 I gave birth to my beautiful little boy, Alby. The Paediatric Dr at King Edward suggested we get an ultrasound on Alby’s head as he suspected he had Microcephaly, his head circumference at 39weeks, was only 30cm. 

When he was 6 days old we got an ultrasound on his head to check the size of his brain, where they found his brain appeared smooth and his soft spots were almost completely fused already. We were called about the results had to admit Alby to PCH for a MRI and EEG. His microcephaly was confirmed and they suspected due to his smooth brain appearance that he had Lissencephaly. 

It was terrifying, I didn’t know what this would mean for Alby, so I got to researching and my heart was completely shattered. 

At 6 days old as an inpatient at Perth Children’s Hospital he was diagnosed with severe Lissencephaly, Pachygyria and Epilepsy. His EEG showed that his brain was rittled with seizure activity and he was having focal seizures. The next day we started him on his first seizure medication (Keppra). 

The neurologist explained his condition as being a rare brain malformation that occurs in 1 in every 100,000 births. The malformation occurs between 12-24 weeks gestation and is terminal. It leads to severe disabilities and a shortened lifespan. He said that many children with Alby's condition will die before their second birthday, and that most do not live past ten years of age. The Doctor told me that the usual cause of death is from respiratory illnesses, aspiration or uncontrolled seizures. He said that Alby will most likely never walk, talk, have feeding difficulties or be able to live a normal life. 

Alby needs full-time care for the rest of his life with constant therapies and early intervention to help him reach a better quality of life. The Doctor explained that developmental milestones will be severely difficult to reach, and if they are reached the seizures will take away these milestones. The majority of children with Alby’s condition have a cognitive ability of a 3-5mth old. 

Through joining multiple Facebook pages, following other lissencephaly journeys, I have learnt that through the right care, seizure control and therapy, his life chances may be improved.

Alby at has spent a total of 74 days on the Neurology ward at PCH since he was 1mth old. He has been battling seizures, apneas, feeding issues and illnesses. 

At home my partner and I resuscitated him multiple times prior to his first admission. 

During his first hospital admission,  he was having choking episodes, where he would stop breathing and go blue. They put a Nasal Gastric Tube in for him to feed by and did a swallow study. I was no longer able to feed him orally as it was unsafe. Alby was aspirating after every 6 swallows due to his severe dysphagia. Alby’s seizures got bad, before this admission, Alby only had focal seizures, his seizures started to cause him to desaturate to deadly levels. The lowest his oxygen dropped to was 5%, and it caused him to need oxygen, and they had him on a CPAP machine. They started Alby on a second seizure medication, which was the beginning of a long journey of experimenting on what would work to help ease the occurance of his seizures. 

A few hospital stays later, Alby is out of hospital and now on 3 seizure medications twice a day and 2 indigestion/reflux medications. He takes rescue medications for when he has cluster seizures or seizures that go for longer than 5 minutes. These are administered more than twice weekly. All of Albys medications are costly as they need to be compounded in order to be able to be taken through his NG tube. His medications are constantly tampered with aiming to achieve seizure control, which so far, has been unsuccessful.

These medications cause Alby to be tired most days and take away some of his personality, he hardly smiles, and is becoming more and more immobile. 

Alby takes topiramate, phenobarbitone, biviratecetam, omeprezole, domperidone daily to manage his conditions. He takes clonazapam to help him when these medications aren’t controlling his seizures. 

Home life has changed dramatically, I love my little boy so much. But all the dreams and visions I had for my first born baby boy, were shattered and taken away from us with his terminal diagnosis. My partner works full time, but not enough to afford all the expenses of the house and shopping with todays cost of living, and I am unable to work as I had to quit my job to become Alby’s full time carer.

Alby is completely tube fed through a kangaroo pump 7 times daily every three hours, I am severely sleep deprived. Alby is also hooked up to a hospital grade oxygen monitor to monitor his saturation levels during seizures, and when it drops to below 85% I have an oxygen bottle to provide emergency oxygen to him, this oxygen bottle I must take with Alby wherever he goes. As of January 2025, he now has an added diagnosis of Cerebral Palsy.

I am having no luck gaining acess to the NDIS yet, it is quite complicated and overwhelming for me concidering all that is going on, with the ongoing hospital admissions, the seizures, the daily care and the occupational therapy he needs.

I am trying to raise money to buy him a disability van so that I am able to get him in and out of the car, and so that all of his medical equipment and his pram (soon he will need a special paediatric wheelchair) will fit when I need to attend his many medical appointments and for outings. At the moment I am not confident taking him out and about due to his thermoregulatory issues. It’s also too risky to drive alone with him in the back incase I don’t know he’s having a seizure and he stops breathing and by the time I realise it’s too late to administer oxygen. MY BIGGEST FEAR, being too late to help. 

i will also need to do a renovation of my main bathroom so he has an appropriate place to shower/bath as he will need a special shower chair and a place to change him.

Any funding raised for Alby, will go towards hiring a support worker/nurse to assist me with Alby's day to day needs once or twice a week, as I am absolutely exhausted and am in fear I will burn out soon, and I need to be well to care for him.

It will go towards his medical bills like medication, and equipment he needs such as: splints, supportive seating, hero NXT car seat, and a Bingo Evo Stroller.  This is the equipment that is recommended by his OT. 

The car seat and stroller are both very costly. The car seat alone will cost $8k - $9.2k and the stroller will cost $8k - $11K. 

We would be forever greatful if you could help us towards our goals for Alby, we want him to have the best life possible, where he can experience life outside these four walls, and out of the hospital as much as he can be.

He is beautiful and an absolute joy, full of personality, I will work my best to help him reach the goals, my heart is utterly shattered that he has to face a life full of more downs than ups. 

All my expectations for being a mother were taken from me, as I take on many different roles such as his full time carer, nurse and therapist, which can be absolutely exhausting.

Thank you so much for your time reading through my gofundme.

Id like to spread awareness around what it’s like to raise a little one with a rare terminal neurological disorder, like Alby’s.