Chelsea's FND Fight

Hi, My name is Tai Leckenby and I am starting this fundraiser to assist in vital medical equipment required to bring my 16-year-old niece, Chelsea home. Chelsea is my brother's eldest daughter who has many challenging battles to face in her Functional Neurological Disorder (FND) Fight!

Chelsea's family consists of her Dad (Andrew, my brother), Mum (Meredith), younger sister Keira, and two lively dogs. They live in the Hornsby area in NSW, where Chelsea attended Primary and Secondary School until this silent, debilitating disorder struck while completing Year 10.

FND has now rendered Chelsea immobile with only movement in her fingers! Chelsea was a fit and healthy young lady until she lost the ability to walk and talk last year and was only just learning to navigate life by utilising communication apps on her phone and buzzing around in a wheelchair.

However, when the family thought it couldn't get worse, Chelsea is now hospitalised.

To bring Chelsea home, where she will be in the best environment for treatment and care, she needs the medical equipment that suits her needs, and at the moment, her family cannot provide it.

My brother Andrew and his wife Meredith live on a sole income with Meredith having to take time off work to care for Chelsea. This was manageable before Chelsea's FND rendered her completely immobile as this now requires a level of care that the family cannot fulfill without assistance.

We would love to see Chelsea go home where she can be comfortable in her environment, providing her with the best chance of partial/full recovery.

The following is written by her mum, Meredith.

Quick Summary

Functional Neurological Disorder has had a major impact on Chelsea’s life. Before FND, Chelsea was a happy, carefree 16-year-old, attending our local high school, starting her first part-time job and staying fit by participating in the local teenage gym class. FND has now left her bedridden, unable to speak and only able to control her fingers.

We are trying intensive rehab but are also planning, so we can be able to bring her home. This is going to involve the purchase of suitable equipment to help with Chelsea’s care needs. Such as an adjustable hospital bed, a tilting wheelchair as well as nursing staff to supervise and assist her.

Functional Neurological Disorder

Functional Neurological Disorder, also known as FND, originates from a real problem in the functioning of the brain. It is not caused by any structural damage to the nervous system. It cannot be located in most diagnostic tests. It is most common in young girls but can be seen at any age and any gender. Symptoms appear suddenly and progress quickly. Symptoms include difficulty moving a body part or walking, pain and fatigue and tremor and sensory changes. FND symptoms can only be assisted using different types of therapy and neurology. It heavily relies on commitment from the patient. Most people don't know about FND and what it can do. There are about 4 - 12 cases per 100,000 people. We need to also raise awareness for this disorder.

Chelsea’s daily care

Chelsea requires assistance with all her care needs and supervision 24/7. As she is unable to speak and move, she is not able to communicate her needs if her phone isn’t in her hands. At least 2 nurses are required to turn her every 4 hours and showering is a team effort, with a hoist required to lift and move Chelsea. She requires daily Physio and Occupational Therapy to try to reconnect those neural pathways.

We would like to bring Chelsea back to her family home, but this is not an easy task. Hospital beds that can tilt, raise and have removable side barriers are around $5000. A tilt wheelchair can cost around $6000. Chelsea requires full neck, head and arm support as well. She also needs 24/7 nursing care which can cost around $7000 per week. All donations will be used to help Chelsea return home to us and live comfortably while she recovers.

Chelsea’s Story

A simple gastro bug in 2022 changed our family's life. My 16-year-old daughter Chelsea caught a gastro bug in June last year, June 18th to be precise. Unfortunately, this one turned into so much more….

On 22 June 2022, Chelsea was diagnosed with Functional Neurological Disorder. Like many of you, we had never heard of this before. The effects of this disorder took away Chelsea’s full control of her legs. Thankfully she was still able to walk once her legs were completely straight, but she required help to get them into this position. So, this was our new normal… Part-time school, weekly Physio sessions and lots of time spent in the local pool. Along with this, I was no longer able to work which meant less income to support our family. The Physiotherapist assured us that she would be back walking normally and regain the full use of her legs within a few weeks. Oh, how naive we were.

Just as we were getting used to this new challenge, FND took Chelsea’s beautiful voice. With that, her time at our local high school came to an end and we enrolled in Distance Education. It was here she found an amazingly inclusive bunch of kids who welcomed her with open arms and Mum found a wonderful group of supportive women who are all travelling on different journeys with their teens. So this became our new normal.

With Chelsea’s mobility issues, she was unable to use stairs, even 1 step could be challenging and ramps that were too steep were a no-go too. If her knees bent, she would lose control and fall to the floor, with no way of assisting anyone to get her standing again. I was amazed at how she adjusted to this and just carried on with life. By this stage, we now had weekly psychology appointments and physical therapy with schoolwork in between.

We hit the next hurdle on 06 December 2022. Chelsea’s legs could no longer support her to stand. There was a mad dash to hire a wheelchair and lots of practice transferring from chair to bed/car etc. Thankfully she had great upper body strength so when the wheelchair was positioned well, she could do this relatively unaided. Once again Chelsea just powered on, with this new change and we continued with her weekly therapies in a new world on wheels. Another new normal.

By far the greatest challenge we have faced hit us on 16 February 2023. After a challenging physical therapy session, Chelsea’s body shut down. FND had taken control of the rest of her body, leaving her only in control of her fingers. For the first time, Chelsea was scared about what was happening to her body and her lack of control. There were lots of tears, hugs and very much a feeling of helplessness. An MRI confirmed what the doctors were already thinking. FND again! Watching her confined to a bed each day, yet moving both her arms and legs in her sleep is just heartbreaking. My husband and I swap from taking care of Chelsea to resting and caring for my other daughter and our two dogs.

So, as we spend our 14th night tonight in the hospital after a tricky day, I lay here and wonder what this world has in store for my darling girl, who dreams of studying astrophysics at university. We are taking one day at a time whilst trying to plan how we are going to bring Chelsea home.

Anything donated will be greatly appreciated, regardless of how big or small.