Imagine Watching Someone You Love, Having Their Life Crippled By a Rare Life Ending Illness

Welcome to the page of Tanya Fardon. This page is ran and managed by John Nichols (Tanyas Cousin).

Tanya is 31 years old and has been battling the extremely rare Alexanders Disease since 22.

She has gone from been a fun loving full of life girl to now permanently in a wheel chair with almost no use of her arms or legs, not to mention having a permanent catheter as her organs slowly shut down.

Tanya’s quality of life has suffered. Donations received are very valuable and may be used to help with medical costs, physiotherapy to keep her only active limbs mobile and if we can raise enough funds we would love to get Tanya her own van she can be transported around to visit family, friends and even go on a holiday when she pleases.

Thank you for reading, here is Tanya’s story -

In the early years Tanya was a fun loving young girl who was always very happy with that infectious grin from ear to ear. She was never the most gifted at school but always tried her hardest and always knew how to make people laugh.

She loved music, singing, arts, spending time with family and friends, going clubbing and to concerts and most of all riding motor bikes.

This is Tanya and I (John) at her deb in 2001.



THE BEGINNING OF A LIFE ENDING BATTLE

Fast forward to 2007 Tanya is 22, this should have been the best year of Tanyas life, she had recently being engaged and moved in with her fiancé Jamie. Life appeared to be great, but nothing had prepared anyone for what was about to unfold in the coming years.
Only 2 months after their engagement Tanya was enjoying an afternoon with friends and her fiancé Jamie. They were all making fun and chasing after one another. Tanya had being running around all day and started to run after Jamie, after only a few quick steps her left ankle seized up and she tried to keep running but it was more of a gallop, her ankle just couldn’t seem to move. They all thought she was joking around and didn’t think anything of it as they all continued to laugh.
Later that night she was sitting at her friend’s house just chilling out having cups of tea and talking about motorbikes. Jamie as the joker he is, wanted to scare Tanya he snuck up behind her and jumped out of nowhere and tried to scare her for trying to make him feel bad. Tanya from the fright got a violent eye twitch in her left eye as she giggled with him; once again they all laughed no knowing what was going on.

A week or two later Tanya started to experience a few other changes. One day she dropped Jamie off to work in Lonsdale St, Dandenong; from there she went to her Mums house for a cup of tea as she normally did before she started work. She described to her mum that she just dropped Jamie off to Lonsdale St in the City, her mum said you mean Dandenong and they were both confused with what she was saying.

Later that day at work Tanya was doing tickets and general duties at Kmart. She rang her boss to tell her that she had finished with all the party pies. Her boss said did you mean paper work Yes that what I meant. Tanya started getting a small limp walking around at work, she hadn’t really noticed it but other people were asking why she was limping. Once again it was her left leg seizing up.

She began to experience problems at work as she slowly began to get weaker and weaker. One particular time she was at work fixing a shelf and she put the bracket on the shelf on the brackets and the whole shelf fell onto her left arm and hand as she couldn’t hold it up. The staff room to clock on and off was up stairs which began to be more challenging as she was unable to bend her knees well enough. The alarm bells started going off but she had still not going to the doctors.

Another day before work she went with her Mum to her their family doctors and the doctor picked up that Tanya was not quite right. After they explained her symptoms over the last few months the doctor immediately sent her to hospital for some testing as something just wasn’t quite right and because all the symptoms were on the left side they were thinking she was having a stroke. By the time Tanya got to the hospital she was really disorientated, couldn’t put words together, and couldn’t even remember her birth date. It wasn’t until they flashed the torch in her left her that her entire left eye started moving in its own direction that was when they decided to admit her into Monash Hospital for further testing.

A series of blood test and observation were conducted and the CT scan showed nothing. They finally ordered an MRI which showed the grey matter in her brain was deteriorating. As with most cases with this happening the initial diagnosis was MS due to the patterns being similar to that. Over the next few months they continued to treat Tanya for MS but she was still deteriorating so they did a lumbar puncture which came back negative for MS. The doctors were confused.
Over the next 6 months Tanya went back and forth to hospital for check ups and more screening and blood tests to find out what was happening.

In 2009 Tanya was secretly pregnant and she was holding off telling people until the 12 week mark. She didn’t know she was pregnant until she was in hospital after a severe black out and she was joking around with the doctor saying “Whilst youre doing all the tests why don’t you check to see if im pregnant”. She held the exiting news as her sister had fallen pregnant at the same time and didn’t want to take the shine away from her. Regrettably Tanya had a miscarriage at 14 weeks. Years later it was found out that you cannot have babies with Alexander disease because either the mother would die, baby would do or both. And if the baby made it it would carry the same gene as Tanya and would only live a year.

Completely devastated Tanya started looking into surrogacy, adoption and IVF. She began to go through depression and was looking for answers but clearly she wasn’t in the right state to be supporting a baby as well and her body wasn’t allowing that. Watching her sister go through the preganancy she was so happy yet so hard.

TREATMENT

For the next 3 years Tanya was treated for MS which was not working and she was slowly deteriorating. The episodes from the “MS” were sporadic and getting more intense as time went on, with constant black outs.
The steroid medication prednisolone would settle the episodes and would go back to as normal as could be. As the prednisolone wore off Tanya would be straight back into hospital for more tests and more prednisolone. Tanya was at this point still living at home with Jamie in Pakenham going to hospital at Monash in Clayton.
Tanya began to blackout a lot more frequently and beginning to become more serious and everyone feared of her severely hurting herself, she now couldn’t shower alone in case she blacked out and fell through the glass shower screen.

One particular day she came out of the house walked to the car to go to the shops and went to open car door, then all of the sudden she is laying on the floor having blacked out and her teeth went through her lip.
The constant black outs were beginning to impact her everyday life and making living with her fiancé difficult particularly whilst he was at work.

Around this time they began demanding for more tests to be done because it was clearly not MS and the blackouts were almost daily. Tanya began to take Tegretol to stop the blackouts, baclofen for the muscle spasms, magnesium for cramping and diazepam to relax the muscles and try and stop her from blacking out.
If Jamie was working night shift Jamie's Aunty who had experience working with her husband who had MND would come over and take care of Tanya whilst he was working, just so he had piece of mind at work and new she was safe if she blacked out.

They installed a baby monitor system so they knew when Tanya needed to go to the toilet or even get up in case she fell/blacked out. This is no way to live. One night Tanya got up by herself not wanting to wake Jamie’s aunty up and as she stood up she blacked out and hit her head on the dressing table and then to the concrete floor.

Tanya was immediately transported back to Monash by ambulance and they did some more in depth testing and found out that she had an autonomic deficiency which means her organs would sometime not work properly and this would cause the black outs. They further tested with electrodes and discovered that when she would stand up her blood pressure would drop due to her posture changed. This was when they did a biopsy of the muscle and tissue of her left thigh.

2010 an eventual diagnosis 3 whole years later from her first lot of incidents. The results came in from the biopsy Tanya had finally got an answer as to what was deteriorating her body so quickly. Tanya’s specialist had told Tanya she has an extremely rare condition called Alexanders Disease which is a degenerative disease, which effects the myelin sheath around the nerve fibers in the brain, stopping signals to her limbs and organs. The disease is incurable and that she will continue to have less use of her organs and body and it will eventually take her. They can control the symptoms but not the disease and to keep up with physio. (More on Alexanders Disease at the end)

It was really shocking, after searching for more than 3 years she finally had the answers she had been waiting for, but they weren’t at all positive. The specialist consoled Tanya and her family and explained the eventual prognosis. He said that once you have the onset of Alexanders Disease you will generally not surpass 10 years and only half of that in infants.

MOVED TO PALLIATIVE CARE HOSPITAL

From this point on Tanyas life had changed forever. She was now moved to Bethlahem in Caulfield a specialist palliative care service with a state-wide role in caring for those with a progressive neurological diseases. Tanya was still able to walk but was becoming increasingly difficult so she began to use a walker under guidance in case she had a blackout and when she wasn’t using her walker, she was put into a wheel chair for safety reasons in case she fell or had a blackout.

Tanyas mobility was decreasing due to lack of use from sitting in the chair or laying in the hospital bed and physio was not strenuous enough to stimulate the muscles enough to keep the movement. At the same time Tanya would start to lose her dignity and independence as she would have to be helped to the toilet, showering and completing everyday tasks that we take for granted.

Tanya would on the odd occasion go on outings with family to go to the shops, play bingo and still able to stay at home with Jamie on a weekend if he was able to take of her, until she once again had a fall. Due to Tanyas deteriorating condition she couldn’t help to feel helpless and would often be in a depressive state.

Due to safety and the deterioration of her mobility she was then unable to go home. She lived at Bethlahem for almost a year.

MOVED TO RESIDENTIAL CARE

Then the firm advice given by the specialist was to put Tanya into a temporary residential care home so she could still experience everyday life but still have carers available to cook meals and care for her. The initial discussions were to have Tanya go to a high care place in Caulfield across from the station, but Tanya didn’t want to go there as she didn’t want to be too far away from her family. So they found an alternative which was Stawell St Cranbourne.

2011 Tanya was moved to that temp home at Stawell St in Cranbourne in close proximity to family. All of the people living in house have ABI (Acquired brain injured). Tanya couldn’t help to feel like she was been abandoned because she was no longer able to live her normal life at home. All of her independence was completely ripped away and the hardest part was living away from Jamie and not waking up next to him and waking up to strangers every morning.

Once she moved to the house it was beginning to be difficult to get to physio is difficult with all the clients in the house, without getting a taxi.
Tanyas Neurologist Dr Earnest Butler has told Tanya that if she gets regular physio and stimulates the muscles it will slow down progression of Alexanders Disease and potentially be able use her limbs but she no longer able to afford appropriate physiotherapy from her home.

Tanya now lives with a permanent catheter and colostomy bag. This year alone she has been back to hospital at least once a month due to kidney infections and kidney stones because her body is rejecting catheters they put in aswell as having an allergic reaction to the antibiotics used. Tanya has now got a permanent suprapubic catheter (tube) which drains urine from her bladder as her bladder is no longer able to allow Tanya to urinate. Tanyas body body is rejecting the new suprapubic catherer as she has an over active bladder and the urine goes back into the kidneys, if this Cather doesn't work they will have to make a tube from her bowel as they are running out of options.

BEING DISABLED SUCKS

Since Tanya has been permanently in a chair she is treated differently the community look at you different, children point and people discriminate. People think disabled people getting everything paid for but in fact they are worse off. She is stuck with what she gets from the Government.

Tanya’s little niece Ella who is now 6 years old, sometimes gets her mum to right little notes to her Aunty Tan and they are kept in a fairy wishing ornament.
The notes say:
- “I wish for your sickness to go away forever”
- “I wish for you to be healthy”
- “I wish one day you could run around with me at the park”
- “We wish your legs will get better soon… I really love you in the whole wide world Tanya”
- “I wish you strength and hope”
- “I wish for you love, laughter and happiness”

This make Tanya very sad to read them but beautiful at the same time. It is so beautiful to know what’s her in little head and Tanya is very appreciative to have them regularly visit.

Due to difficulties with her illness and immobility Tanya hasn’t been to Jamies house for months and rarely leaves her permanat care home. Tanya is very grateful she still gets visits from her Jamie and her family but would be lucky to leave the house once a week. She is
For Tanya to go home she would need to hire a hoist. She would really enjoy to go home for Christmas and spend time with Jamie and her family.

Another difficulty is the fact that Tanya can’t go on holidays because there is no disability safe holiday destinations that she can find that only allow one person. Most she finds are for groups of 10 or more but Tanya would like some time with just Jamie.

For Tanya to go on a holiday she would need a portable hoist, her motorised Chair, a disability transport vehicle plus all of her medication and a carer available if required.

WHAT ARE THE DONATIONS GOING TOWARDS 

One of the biggest stresses is the financial situation Tanya is now in. She had gone from living with Jamie or her Mum with no bills. To now living in a residential living cared home where her living expenses are outweighing her income.

She had worked for a small time doing research for a disability company.

Over the years Tanya has purchased aids like her motorised wheel chair, supportive cushion for her chair which $1400 Paid, Commode which she showers on $3,000.

We are looking for donations to help let Tanya live a better quality of life.

Donations received are very valuable and may be used to help with medical costs, physiotherapy to keep her only active limbs mobile and if we can raise enough funds we would love to get Tanya her own van she can be transported around to visit family, friends and even go on a holiday when she pleases.

Currently Tanya has to plan with her house to get transported and would be lucky to be able to once a week if she is lucky, as they have a few people in the house who also require transport.


Thank you for reading and donating to Tanyas cause, she will be forever gratfeul and hopefully we can make her last years memorable and able to live more comfortably.

Any additional information please contact John through the contact section.