Meet Sierra

This little sweetie, Sierra Rose is 9 years old. She is bright, has an amazing spirit and has cerebral palsy.

In October 2015 Sierra attended physiotherapy in the UK focused on enabling her to use her hands to drive a motorised wheel chair. She was successful and for a child with severe disability this is a miracle.

This UK physiotherapy and many other OS trips accessing experts across the globe who can really make a difference in enabling Sierra to be go beyond her limits, have only been possible through the financial support of others.

Some of the highlights include:  (*this blog has posts throughout where you can read about individual trips and specific results)

1. Sierra learning to use the muscles in her eyes with specialised contact lenses provided by a Prague specialist eye doctor
2. A massive improvement in Sierra's immune system after stem cell treatment (using her own cells) in a German stem cell clinic
3. Talking to her parents and teachers through a communication computer that is controlled by her eyes

The aim is to have Sierra be as independent as possible!

Sierra Today......Since October we have been raising money to buy the motorised wheel chair which Sierra used while in the UK. The chair will mean an entirely new and exciting future of independence for Sierra both at school and at home.

 Chair cost $13,000  

Funds raised $1,700

We'd love you to contribute. Any $$$ amount will make a difference!

Come and join in the fundraising fun!

 

 

 

 

 

 

 

 

 

 

My friend Ravi

Ravi is my taxi driver and friend from when we arrived back into Australia in 2008. 

One day in the car he overheard my conversation about needing money for Sierra, it was our initial fundraiser in Australia. What he did next flawed me......He asked Shane, Sierra and me to come to his Sikh temple. I have never experienced being humbled in the way those two Sunday mornings impacted me. He asked that we wear traditional clothing, I covered my hair. He asked that we write Sierra's disability on a piece of A4 paper in bold black felt pen and he stuck it on the front of a cardboard box. He spoke to the temple president and arranged for us (with Sierra) to sit at the entrance of the temple as people arrived for worship. As people arrived family after family, person after person walked up and put cash donations in the box. Some put in a few dollars and some $20, $50, $100, $150. For at least two hours straight on both occasions we knelt and said thank you to every person who gave. We had hundreds of donations. NOT ONE person knew us or queried how we were chosen to be gifted. Many people touched Sierra's hands and gently stroked her head. Some women smiled and asked if they could hold her. So many families said they would pray for her. And all Shane and I could really do was say thank you to each person who approached. I have never gotten over that experience. The world is full of love, generosity and kindness. ❤️

Sierra Today

Have a read through the recent posts and be amazed....Sierra is driving a motorised chair

You had something to do with this extremely high level disabled child being able to see, talk with a computer and now drive a motorised wheelchair. For a child like this any of these are a miracle.

 

These achievements happened through multiple trips overseas, engaging the best therapists, often from other countries and corners of the globe and a relentless commitment from us to have Sierra go beyond her limits.

Would you be willing to help again? The motorised chair we are buying costs

£5850

We are asking everyone who has ever been involved in our journey to look and see if you could be involved again. You could hold a fundraiser at work, at yoga or make a donation. Any amount will make a big difference.

 

You can donate using the account details on this helpsierra blog or contact me on sierrahelpfund@gmail.com for further details.

 

Love Karen, Shane and Sierra xx

Helping Hands trip...

The two weeks was by far one of the most successful Sierra trips we've had. Using the two physiotherapists from Prague was excellent in both saving money from flights and in the quality of physiotherapy they provided. I was amazed how much further Sierra's stamina lasted and how supple we were able to get her limbs in leading up to the physiotherapy intensive, by using such incredible quality in care.

Sierra was successful in starting to use her hands and in driving a borrowed motorised wheelchair for the first time. By the third day she was lifting her hand off and on the driving stick to change directions and reposition her hand. Very exciting to see.

Now I have new problem.. how do I buy that chair?

Helping Hands trip...

Arrived in London on Friday. Wow! What an intense week Tuscany was...

One of the many benefits of these OS trips is the many challenges one faces when they leave their house with a severely disabled child. There are so many more challenges than anyone could ever imagine before they left home.

The OS journey has me problem solve, find new ways to do things and build up resilience. It makes it far harder to argue for staying home from a visit to the Westfield on a regular Saturday afternoon (10 minutes drive) just because I am tired ... if we can make it all the way to Tuscany!! 

I have planned this trip for months and yet on the third day of the physiotherapy with Tereza we had both a breakdown and a meltdown! I returned from an hour or so of the yoga training, just a few minutes walk from where we were staying. I found Tereza sheet white and angry. Not with me or with Sierra, but from what was a BIG day. Sierra had choked, had big seizures, spat out nearly all the food she had been fed and then angrily tried to eat the spoon out of Tereza's hand due to hunger and probably dehydration. 

I took one look at Tereza and knew she needed a break but it also kicked off my own realisation (yet again) of ALL that Shane, Sierra as I deal with on a daily basis. It's always stressful, it's often life or death and Sierra's need for care and focussed attention is relentless. 

I started crying, sobbing in fact. Thank goodness there is somewhere in the world that was safe enough to really 'go there'. I cried for about 24 hours. It just kept coming in waves. Seeing Tereza's face had been like looking in a mirror.

Then the crying came to an end...(for now)

Helping Hands trip...

Both the therapists I have flown over from Prague last week and now this week have been working with children running Hippotherapy camps for many children and families.

"Hippotherapy is a treatment method of physiotherapy (rehabilitation) which uses a specially prepared horse, specifically the movement of his back during a walk, to provide therapeutic effects. This movement is alternating and repeats rhythmically and cyclically. It offers stimulation for all senses and this directly influences motor behavior of the client through the activation of all levels of central nervous system. Our main aim is to improve neurological functions and sensory processing in children with various health disorders."

One of the ideas I am starting to consider is about collaborating the efforts between the UK and EU therapists even further next year....

The farm where we are accessing treatment with Anel this year is the home of a child with complex needs like Sierra's. They have built a property that has a hydrotherapy pool, therapy rooms and stables with horses, all of which the family intend to offer for other children with disability.

One of my commitments is to empower families like mine to access a global approach to treatment. While some of what each country offers is excellent, I have found that a combination of the various approaches, at different times of Sierra's journey, has been most impactful. 

I see a possibility of supporting other families accessing treatment that is not available where they live. 

If we were to have the Czech physiotherapists working from the same place as the UK therapists for a couple of weeks next year, and encouraged families to access the therapy all together it would be easier. 

Something like: one week of Hippotherapy in the morning, physiotherapy in the afternoon and a couple of hydrotherapy sessions. I think it would be great for the parents as well!

Food for thought!

 

Helping Hands trip...

We made it to Rome, and my shoulder is still intact. I was so concerned leading up to this trip about how I would manage two weeks of lifting Sierra and her equipment, several times a day, for two weeks. I've had an injured shoulder for weeks which hasn't been recovered due to lifting Sierra at home, so being away with her, full time for two weeks has been worrying. 

I had to ask for the airline attendants to help with the lifts from her wheel chair, to the aisle chair that takes her through the plane, onto the plane seat, then back onto another aisle chair to exit the plane, then onto her wheel chair and so on.....plus bags! 

Thankfully Tereza, Sierra's physio for this week has arrived now arrived from Prague. Yesterday we took what became an epic journey from Rome to Tuscany via Pergia! Talk about annoying. There were no hire cars in Rome, NONE. We had to take a train to Perugia, then a taxi to Perugiua airport and then drive to Tuscany! 

Luckily Tereza is comfortable driving on the right hand side, and was able to help with all the lifts and transfers from one vehicle to another, which included Sierra, her wheel chair, car seat and many bags.