Help Lachlan Stand Tall

Toni Crawford is organizing this fundraiser.

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Hi family and friends, we are setting up this GoFundMe page to help our 16year old son, Lachlan, stand tall once again, following his diagnosis of Scheuermann's Disease, with a progressive lumbar, low thoracic kyphosis. Lachlan requires risky spinal fusion surgery to prevent it from progressing and further impacting on his internal organs and to assist in straightening his spine.

'The Backstory'

The first two diagnoses

The emotional rollercoaster ride began for Lachlan and our family back in September 2020 when we were just starting to get some normality back in our lives after Covid-19 had hit Sydney where we live, when Lachlan woke one Saturday morning with a numb thumb. After he couldn't feel Chris sticking his thumb with a needle I decided to take him to our local GP. We were fortunate to get an appointment that same afternoon. The GP performed some nerve function tests on Lachlan's thumb and decided that Lachlan needed it to be further investigated by having a CT scan on his brain to see what was causing the numbness. I also requested an X-ray on his spine as Lachlan appeared quite hunched over, which I had put down to poor posture, gaming and being on his mobile phone a lot. The results of both tests were unthinkable and unfathomable to both Chris and myself. The CT scan revealed that Lachlan's brain had moved. He was diagnosed with Cerebellar tonsillar ectopia with a descent of 7mm which meant it was sitting below the base of the skull into his upper spinal canal. This can potentially cause severe, life-threatening complications with cerebellar tissue blocking the spinal canal, preventing Cerebrospinal fluid passing through. The X-ray revealed that Lachlan had Scheuermann's Disease.

Our GP recommended that Lachlan see a Neurosurgeon to investigate both diagnoses. The earliest Lachlan could get in to see the Neurosurgeon was in the October school holidays. First Lachlan needed to have a MRI done on his Brain. Unfortunately due to the urgency of this test Medicare and our Private Health Fund did not cover the cost of this test. Lachlan also needed to go to Blacktown to undergo an EOS scan on his whole body. This scan provides frontal and lateral radiography images, while limiting the X-ray dose absorbed by Lachlan whilst in a standing position. Unbeknown to us this was the first of many of these scans, some of which we have had to pay up front. I was so proud of Lachlan as he went in alone for every CT scan, MRI, EOS scan and X-ray.

We finally saw the Neurosurgeon in his rooms at Norwest Private Hospital, an hour's drive away from our home. The Neurosurgeon diagnosed Chiari 1 Malformation and informed us that at this stage no brain surgery was required as there was enough Cerebrospinal fluid passing through with no blockages, pressure or fluid building up between his brain and skull. The cause of Lachlan's Chiari Malformation is unknown. It is possible that it is congenital and that he has had it since birth. This diagnosis now means that Lachlan has to undergo MRIs on his brain for the rest of his life to monitor the Cerebrospinal fluid passing through and for any further descent of the cerebellum. The EOS on Lachlan's body revealed that the Scheuermann's Disease has pushed his stomach out and has caused his chest to go concave. It will impact his lungs and other organs as his curvature and kyphosis increases. This first EOS scan revealed that Lachlan's curvature was greater than 85o and we were informed that it was too late for a spinal brace and that spinal surgery was necessary. Following this the Neurosurgeon referred Lachlan to undergo a MRI on his whole spine to examine, in more detail, the kyphosis in his spine.

CT Scan of Brain (rotate photo to left to see in upright position)

Scan of spine (rotate photo to left to see in upright position)

The Third Diagnosis and another Specialist

We headed into Lachlan's next appointment with the Neurosurgeon in November thinking that we would find out what the spinal surgery would entail and a timeframe for it. The Neurosurgeon informed us that an artefact had shown up on the Cervical part of Lachlan's spinal chord (Upper part of his spine). The Neurosurgeon presented Lachlan's case to a team of specialists to discuss further diagnostic tests. Initially we were informed that Lachlan may have moved during the 1 hr long MRI but he didn't want to subject Lachlan to another MRI until he had spoken to other specialists. Lachlan was then referred to a Neurologist to investigate what we found out to be C6/7 lesion on the left side of his hemicord. There was real concern that the lesion may have been a tumour or that Lachlan had Multiple Sclerosis (Lachlan's paternal grandmother has MS and we were informed that it can be hereditary and although it was rare for children to be diagnosed with Multiple Sclerosis there were known cases). Lachlan had 9 vials of blood taken to test for MS, cancer and some genetic blood disorders. The Neurologist recommended that Lachlan undergo a Nerve Conduction Study, a series of four tests each taken a week a part to test nerve conduction in all limbs to his brain and nerve conduction from his optic nerve to his brain to determine if Lachlan has Multiple Sclerosis. This was to begin mid-January and continue into February in Bella Vista, a 2hr round trip from home.

Mid-December, Lachlan underwent another MRI on his brain, this time he was injected with a gadolinium-based dye into his arm intravenously. We were eternally grateful to find out four days before Christmas that the lesion was benign and that it is stable. It will continue to be monitored by his Neurologist. We were so relieved and thankful that we could relax, pause, breathe and step off the rollercoaster ride for just a few weeks and enjoy our Christmas as a family. Lachlan's nerve conduction study tests returned all clear late February, with no signs suggestive of Multiple Sclerosis. However, he now endures migraines and is on medication to treat these which are being monitored by his Neurologist.

A New Spinal Surgeon

Following the investigation of the spinal lesion, the Neurosurgeon referred Lachlan to a new Spinal Surgeon based at Macquarie University Hospital, 1 1/2hrs drive from home. Prior to seeing his new Surgeon in April Lachlan underwent another whole-body EOS scan to compare how his Scheuermann's Disease had progressed. Lachlan's curvature has increased. The main kyphosis is across the lower segment from T7 to L1, measuring 80o. Kyphosis is from superior endplate of T2 to the inferior endplate of L1 with a cobb angle of 97o. It is anticipated that this will further increase leading up to his surgery.

Surgery Details

Lachlan will undergo a T2 to L1 Posterior Spinal Fusion with Ponte Osteotomies on the 2nd of November and will be off school for the rest of the year to allow the fusion to strengthen. Lachlan will have 5 vertebrae fused from T2 to L1. The surgeon will take bone from these vertebrae to use for bone grafts to fuse his spine. He will have two metal rods inserted on either side of his spine with screws inserted from the rods into each vertebra. It is anticipated that his curvature will not increase following this. His surgery will take up to 8 hrs and he will be in ICU for 3 days following the surgery and in hospital for 1 1/2 weeks all going well. The risks of spinal chord injury and permanent nerve damage to his limbs are terrifying but we take comfort knowing that he is in the best of hands. All going well Lachlan will see his surgeon after having another whole-body EOS scan in October prior to his surgery.

How you can help

Surgery and Medical Costs

It is anticipated that Lachlan's Spinal surgery costs will cost $26 000 for his spinal surgeon and anethistist, all going well. We have top hospital cover which will cover almost all of Lachlan's hospital stay costs, including ICU. We expect there to be additional hospital costs for scans, medications, physiotherapy etc. Each time Lachlan sees a specialist there is an out of pocket expense. We are desperately trying to save money to cover Lachlan's medical expenses. Unfortunately we will fall short and not be able to meet all of the financial costs of Lachlan's surgery and medical costs. If you would like to assist with Lachlan's surgery and medical costs, any financial donation through this GoFundMe page will be heartfeltly appreciated. All funds raised will go directly towards Lachlan's medical and surgery costs.

To help get the word out

To help get the word out please feel free to share the link to your social media pages. We sincerely thank you in advance.

Our eternal gratitude

On behalf of Lachlan, Chris, myself and Lachlan's brother Joshua, we would like to express our eternal and heartfelt gratitude to the outpouring of love, support, guidance, sounding boards and lending of shoulders to cry on from our family, friends, work colleagues and Lachlan's High School staff and friends whilst we navigate this curve-ball journey. We have endured this ride with Lachlan attending high school full time, Chris and I both working full time and Josh also working, with all of our immediate family living interstate, with closed state borders and the threat of Covid-19 preventing those much-needed hugs from happening in person.

About our Lachie

I am so in awe and inspired at how Lachlan has taken all of this in his stride. He has shown incredible resilience, courage, maturity and inner strength despite his understandable anxiousness about his impending surgery. For those of you who do not know Lachlan please know this. He has shown such bravery going into each X-ray, MRI, CT and EOS scan on his own, only needing Chris or myself to hold his hand for the blood tests. Overall, he has had 14 vials of blood taken on this journey. Lachlan has an incredible soul and brings so much light, love, cheekiness, joy and laughter into our lives. We love his innocence and selflessness. We love how much love he has for every family member and that he isn't afraid to tell them that he loves them. I especially love how at 16 years of age he continues to give me a kiss and a cuddle every morning and night whilst saying, "I love you mummy" and how he puts his cheek up for me to kiss him back. We love how thoughtful and considerate he is towards others. We love how passionate he is towards the sporting teams that he follows including his beloved Sydney Roosters, The NSW Blues Team and St Kilda AFL Football Club. We love his passion for cars and his goal to work in the automotive industry when he finishes high school. We love how you remind us every day that you are going to be taller than me. We can't wait to see you stand tall. We are truly blessed to have you in our life.