Tag Archives: fundraising

2015 Fundraising Goal – A Sit-to-Stand Wheelchair

It has been a while between posts.  Lets just say there are just not enough hours in a day…..or to be philosophical, perhaps there are enough, and what really needs to be done is done.  I have made several starts on potential blogs topics, all still sitting in my “drafts” arena as I either didn’t get time to follow through or just simply didn’t feel I could adequately express that which I wanted to.

In any case at THIS point in time, the universe has forced the hand of fundraising into the limelight (something else that I haven’t been able to turn much attention too pretty much since my last blog) and so here I am  commencing our fundraising efforts for the coming 12 months.

I will leave the mixed feelings I have about fundraising for a topic on its own, and today concentrate on talking about what we are actually striving for. This year it is providing Mikayla with a Sit- to-Stand Wheelchair. This is a piece of equipment which is a manual wheelchair and standing frame all in one and it will have a lot of advantages for Mikayla moving forward.

Having outgrown both her manual wheelchair and her standing frame, it is timely to look at this option for Mikayla now.  Having the two in one means she can have both with her wherever she is AND she will not only be able to use it to move around but will also be able to stand up while in it, and do that independently!

This is a picture of me trying out a wheelchair that I can also stand up in. Here is what having a ‘sit-to-stand wheelchair’ would mean for me:

I could stretch my legs by myself – this would make a BIG difference especially at school.

I could stand up anytime and anywhere I want, and then sit myself down when my legs got too tired or sore.

  • I could be at eye level with my peers and join in when others stand.
  • I could easily do little bits of standing throughout my day without  needing someone to help me.

It will reduce pressure on my spine.

If I can get it by the time I have my surgery, it will also really help with my rehabilitation because I will be able to incorporate and gradually extend the time I spend standing up. I will be able to do small amounts of standing more often.

Standing up and extending my legs will always be very important for me to do with my kind of cerebral palsy.  How great it would be to have the freedom and independence to do this myself throughout my day.  “  (Mikayla)

 THE PAST YEAR HAS BEEN A TOUGH.

All geared up for her major orthopaedic surgery to occur last year,  Mikayla had 2 attempts that had to be aborted due to complications.  Since then, she has been undergoing a lot of testing.  While she waits to try again, she has continued to work hard, doing lots of low impact therapy and positioning, to keep her muscles in the best shape she can, for when the surgery can finally happen.

As you may remember from previous posts, the surgery Mikayla is waiting for will lengthen the muscles and realign the bones in both of her legs to counteract the damaging impacts that cerebral palsy has placed on her growing body.   She is hoping to regain abilities that she has worked hard to acquire.  Some of her goals include:

  • “ To keep increasing the things I can do independently as I grow up.
  • To get back on my feet and be able to stand up straighter and for longer – even if I do have to hold on to something.
  • To be able to get into and out of my wheelchair by myself or with the help of one person, rather than needing to rely on a hoist.
  • To be able to get back on a horse as soon as possible because I love riding so much and it is also an important and enjoyable physical therapy for me.
  • To get back on my modified bike to be able to enjoy some exercise and the out-of-doors with my family. “       (Mikayla)

Therapy, positioning, and equipment will be ongoing elements in Mikayla’s life, and our family will continue to face challenges in helping Mikayla to reach her highest level of independence into adulthood, while also giving her all the opportunities we can to enjoy her childhood.

There is no Government funding available for her Sit-to-Stand Wheelchair but we are passionate about the difference it will make.

You can help us raise funds towards the purchase of a Sit-to-Stand Wheelchair for Mikayla by DONATING ONLINE using this link www.developingfoundation.org.au/family/mikayla and clicking on ‘Make a Donation’ above Mikayla’s photo. The Developing Foundation Inc is a registered charity and as such, donations of AU$2 and over are  tax deductible for Australian taxation purposes.

We are grateful for the opportunity that The Developing Foundation gives our family to fundraise towards providing Mikayla with specialised therapy and equipment and for the support that she receives. .

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Mikayla’s Riverwalk 2014

                                           

To view our slideshow of this year’s Riverwalk Event, just click on this link:  Riverwalk 2014   (you will need to open it, then go to “slideshow” and select “from beginning” for it to run, or alternatively you can simply scroll through the slides .

riverwalkLast year, Mikayla determinedly started the 5km Riverwalk, taking a number of steps in her walking device before completing the distance using her modified Trike with the support of her team. This year, with the decline in her legs and with her arm in a cast, Mikayla used her hippocampe, but that didn’t dampen her enthusiasm and she really enjoyed the fun of the day. FUNDS RAISED through on-line donations and sponsorship for Mikayla and her team will help pay for therapy and equipment that she needs after her upcoming orthopaedic surgery to help her get back on her feet and regain abilities and independence that she has worked very hard to acquire throughout her childhood.
Online donations can still be made at www.developingfoundation.org.au/family/mikayla using the “make a donation” button above her picture.
Riverwalk is a wonderful opportunity for Team Mikayla to fundraise towards the many treatment and equipment needs that are not government or charity funded for children with Cerebral Palsy where we live.
We enjoyed participating in the event and sharing a lovely spring morning by the river with our team of supporters

Surgery, the next phase of Mikaylas Journey

Some of you may have read a previous blog in which we were coming to terms with the change in circumstances we were experiencing when Mikayla became flagged for orthopaedic surgery.  If you  haven’t read it, you can catch up on it via this link:  http://www.sharemikaylasjourney.wordpress.com/2014/02/27/growth-friend-and-foe       So at that point, prior to the rigorous testing and analysis that was to follow, Mikayla had been flagged for soft tissue surgery, having developed contractures in both her knees, and having had a poor result from her last botox A intervention back in September 2013.  Botox A had been our friend for many years with Mikayla undergoing something like 13 or more of these treatments to her lower limbs starting at about 2yrs old!

botox day 2006-08-29 (3) DSCF0827 6 June2009 (121)

In a nutshell the Botox A injections were delivered under anaesthetic to spastic muscles.  The idea is that the Botox inhibits the signals causing spasticity from getting through, allowing a window of opportunity to work on building strength in weak muscles and to stretch those that need it through intensive therapy in the weeks following the injections.  The botox effect is only temporary wearing off in a number of weeks (sometime after just 6 weeks for Mikayla, but sometimes lasting longer).  During this time though, Mikayla was able to make some really good physical gains, benefitting from the intensive stretching and strengthening that she did both in her therapy sessions and at home.  Then the ongoing use of various equipment, therapy and home programming (stretching, strengthening and patterning) continued, in order to simultaneously develop her abilities, and try and reduce the toll Cerebral Palsy takes on her body as much as,  and for as long as possible.

Having developed contractures from her significant growth, it was deemed that botox was no longer useful in helping her and we were thrust into this next phase, the phase of surgical intervention and in the meantime “maintenance”…something else we were unprepared for at this point.  Now, rather than improving what she was able to do, our focus was to turn to maintaining as much of her mobility as possible, and try to prevent the contractures from getting worse while we waited for “the process” to happen. Not an easy task, as during this past 12 months, Mikayla has continued to grow (as children do at her age), and we have seen it become more and more difficult for her to do some of these hard earned achievements – like maintaining a standing position, even with support, taking assisted steps, and riding her modified trike.  The compounding affects that reduced functional ability in her legs has for her is frustrating.  Deforming bones, and knee contractures make it even more difficult to make her legs move the way she wants, and more difficult to work against the forces of gravity, spasticity, tone and weakness on her body.  Although she still tries to do as much as she can, it means that she has to spend much more time sitting in her wheelchair, which means muscles used for standing and transferring get weaker, and her leg muscles are in more danger of shortening because they are in a bent (flexed) position for longer periods of time….. the less functional her legs become, the more she has to be in the wheelchair and so on.

Having undergone lengthy testing and measuring, discussion and analysis since that day, Mikayla will soon undergo significant orthopaedic surgery to both her legs.  Some muscles will be lengthened and her bones realigned to counteract some of the damage that couldn’t be prevented even with all the interventions we have been able to provide for her so far.  Without this surgery, Mikayla will continue to lose function in her legs, will be in more pain, and will continue to lose some hard earned physical independence.   The good news is that all the things we have been able to provide, have put Mikayla in the best position she could be in to undergo this surgery, and her drive and determination will stand her in good stead to face the long road of recovery that lies ahead.

The rehabilitation that she will require after the surgery, is extensive, and the degree of success she has in regaining abilities such as standing, stepping,  and transferring, is largely dependent on the type and  quantity of rehabilitation therapy we are able to provide for her for many, many months following the operation. Our goal is to be able to provide Mikayla with the therapy and equipment that will give her the best chance at successfully regaining the level of physical ability and independence that she has fought hard to acquire throughout her childhood, and to have the chance to continue building on these as she strives to reach the best level of physical independence that she can as she grows up.  Imagine the difference it could make as a teenager or adult to be able to transfer yourself out of your wheelchair, versus always having to rely on the help of someone else, or on the use of a hoist for example, or to be able to walk from one room to another using a walking aid rather than having to transfer into a wheelchair at all??

To that end we are currently fundraising towards the expenses we face for therapy and equipment over the next 12 months, to give Mikayla the best chance at getting back to her best level of physical ability – and possibly even to surpass it!  If you want to be part of making this difference to Mikayla, online donations can be made to her charity webpage  at www.developingfoundation.org.au/family/mikayla from anywhere in the world   Here you can also read more about her story, the costs of therapies that can help her, and what her own goals are.  The next 12 months will require our concerted efforts and will leave little time, energy, or resources for coordinating and running fundraising events, so any support is greatly appreciated.

As we face this new challenge in Mikayla’s journey we appreciate the continued support of our family, friends, and all those able to contribute in some way to making a difference to our little girl, in the lifelong challenges she faces with courage and a smile. Mikaylas own Kidwalk Donated by the Lions  

A marathon effort

On the weekend our family participated in The Developing Foundation’s 30th Annual Riverwalk Event in which families like ours can seek sponsorship for completing a 5km course to fundraise for unfunded and unmet needs.

Riverwalk 2013, was the 30th anniversary of the event. It was a beautiful spring day and we all enjoyed sharing it with family, friends, and supporters.

Although a 5km run might be a marathon for some, every step takes a marathon effort for Mikayla, and this year she was determined to have a go at starting off the course, walking. Mikayla managed to take an amazing 300 steps in her walking device, covering approximately 70metres, before changing over into her modified trike and finishing the rest of the 5km event, with the support of her team! What a massive achievement for a little person for whom simply standing up is challenge!

Mikayla, born 13 weeks prematurely, is no stranger to a challenge, facing them daily as a result of having Spastic Cerebral Palsy. We are so proud of her desire to have a go, and for the effort she puts into things she does. She takes so much in her stride, and her determined and fun-loving spirit is an inspiration to us!

Fundraising has been a necessity over the past few years where time is of the essence, and the specialized therapy and equipment that it has helped pay for, has made an enormous difference to Mikayla and to our family as a whole.

The wheelchair accessible vehicle has given Mikayla the freedom to get out and about in the community in her power wheelchair, and enables us to transport equipment such as her modified trike, walking devices, and hippocampe, making it possible to share in family activities such as bike riding, bushwalking, the beach and camping, together. Not only does such equipment contribute to her ability to do more things more independently which is important, but there are important physical and emotional benefits as well.

The cost of Mikayla’s ongoing therapy needs is largely unfunded, and has been for some time, yet it is still so important for her continued development and to help her body adjust to changes as she continues to grow. Fundraising via Riverwalk and other events we have done, also contributed to the costs of doing the NAPA Intensive Therapy Course earlier this year, the results of which were so impressive, that we are now fundraising toward the more than AU$8000 it will cost for her to do a further course in the new year.

We are very thankful to those who have been able to help make a difference to Mikayla, and to those who offer support in any of its many forms as we strive for the best outcomes for Mikayla as she continues to live with the everyday challenges that her cerebral palsy presents her. We are also like thankful for the opportunity that The Developing Foundation Inc gives our family, and others, to fundraise. Without the ability to fundraise, I am saddened to think of all the things Mikayla would be missing out on, from the physical gains she has made to the experiences she has been able to have, and will be able to have in the future.

Donations towards making a difference to Mikayla are still able to be made on line via her webpage at http://www.developingfoundation.org.au/family/mikayla or we can be contacted via teammikayla@hotmail.com
Attached below are a few photos of Riverwalk 2013.

starting off taking steps

starting off taking steps

changing over onto modified trike

changing over onto modified trike

Day 15 Final Day Intensive Therapy

Today is Day 15, the final day of intensive therapy for Mikayla.
This whole 3 weeks has certainly been a bit of an emotional rollercoaster and today is no exception –  I am happy to be seeing some fruits from the labour, sad that we are approaching the end of the therapy, worried about how, when and where we will be able to access more in the future,  glad to be able to spend more time at home again soon,  overwhelmed by the catching up there is to do in other aspects of life now, and thoughtful about how to incorporate new helpful exercises into our daily routine.

Intensive Therapy group photoDuring the course, as at other times throughout our journey,  relationships have been forged and then parted ways, and today was quite sad to say good-bye to everyone.  We will miss the rapport that has built amongst the group – kids, parents, therpists.   However, with social media contacts now exchanged, there have been some new connections made which is nice.  And we can at least continue to share information, stories, journeys.

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Today, I can not help but feel a little disappointed that there isn’t just one more week to go, to allow that extra bit of time for Mikayla practise and further consolidate all the good things that we are seeing.  At the same time however, I can see that Mikayla is physically tired and will be pleased to have a rest from the physical demands on her and also the concentration and focus that is required.

Mikayla’s response to the end of therapy was that there  should definitely be a party for our last day, and helping her organise that has been a welcome distraction in a way!  She has been busy organising what we should wear, who should bring and do what, and subsequently we all donned our PJs or onesies (as this is the current craze apparently), and brought some party food to celebrate the efforts of the past 3 weeks!

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As it turns out, it is possible to wear a suit over your onesie (or your PJs), and indeed to deliver therapy whilst wearing your onesie ….(just in case anyone might be wondering)!   So at the same time as taking down our home programs, taking note of the great work the kids were doing, having a last chat with new friends, asking any last minute questions/advice etc, it was lovely to have that added bit of light hearted fun!

So what were the end results for Mikayla?  Well, for us, it will be a continuing journey of discovery as to how it all comes together, how long it lasts and all the flow on affects.  So stay tuned for that I say!!   From my observations and those of her therapists during the course, Mikayla has made some really good progress in the following areas and has finished the program with :
* improved body awareness, including increased awareness of her centre and self correcting   her body alignment more often
* greater pelvic stability
* greater trunk contol
* looser, lengthened and strengthened muscles in various areas      *better flexibility    *less tone  and *improved trunk rotation during exercises

Some pretty cool things we saw during the therapy included:
* the spontaneous knee walk steps she did, which was pretty awesome!
* putting a hand out to stabilize to the side when she lost balance one time      * pushing up on her arms better in transitions      * more use of a 4 point crawling pattern rather than “bunny hopping”      * visible improvement in her alignment    *longer, freer steps in her walker with less “kneeing in” and less “foot tripping”  * better weight-shifting from side to side  * vastly improved ball handling skills including throwing and catching using 2 hands (which she cant wait to show off at home over the weekend!)

I think that is a pretty impressive list!   (and I might even think of more as I go back through the photos and videos taken to help us at home.)  We have also been told that there could even be further improvement over the coming weeks as she recovers from the physical intensity of the course.

I think it is important to note here, that we weren’t expecting miracles in doing this, nor were we promised any!  We are simply always looking for options that have positive outcomes for Mikayla with the aim of helping her to reach her fullest potential,  be as independent as she can be, and need to rely on as little equipment and modification of her environment as possible into the future.

We went into this therapy program hoping that it would deliver “….strengthening and conditioning, decreasing unwanted reflexes and teaching new improved motor patterns through repetition and correct alignment.” (NAPA Center Website)  We saw the potential benefit in “having the time to thoroughly prepare the patient to exercise”(NAPA Center Website) and wanted to try out the “suit”  and see whether it was a useful tool for Mikayla.  We hoped that participating in this program would help Mikayla gain greater control over her body making some of her daily movement and tasks improved and hopefully easier.  We did not expect that after a single 3 week course, Mikayla would simply get up and walk out of the hall independently!  That is not the nature of Cerebral Palsy nor what we were doing here.  HOWEVER, this intensive therapy course (which was delivered by the NAPA Center by the way)  was a great opportunity for Mikayla, it has given her a real boost, and it has given us another foundation to build on, another string to our bow.

So although we are at the end of this 3 week intensive therapy program, this isn’t the end of the road. The hard work continues from here, in order to maintain her progress, and ideally to further build on it through our home program and incorporating new activities, as well as with the ongoing therapy and interventions she already does.

It is important to understand, that therapy (in one form or another) is an ongoing part of life for Mikayla!  For now at least, there simply isn’t one single answer or one single path to get wherever you are aiming.  There have been a number of therapies, therapy methods, interventions and treatments over the years that have had positive results and contributed to getting Mikayla to where she is today.  Now, we can also add Intensive Therapy and use of “the suit” to the list!….

After a little rest, we will start the challenging task of fundraising once again, so that we will be able to give Mikayla another opportunity to benefit from Intensive Therapy and Suit Therapy in the future (perhaps about 6 months time), to further build on what has been achieved, and to “Make a difference to Mikayla’s life”…..because that is ultimately what it is all about!!

Mikayla's therapists for intensive

Mikayla with her therapists

What were some of the end talleys:
* 48 hrs of therapy
* approx. 28 hrs of travel time (thanks in part to detours and delays caused by some poorly planned and timed roadworks on the only access way to the freeway from our area!!)
* 2777.9 kms of travel to therapy (thanks in part to some very long detours due to roadworks mentioned above!!!)
* approx AU$370 in petrol costs

Anyone wishing to make a donation towards the costs of this specialized therapy for Mikayla can do so online via the blue donate now button under her photo at http://www.developingfoundation.org.au/family/mikayla

 

Fundraising for Mikayla’s needs

i-am-mikayla.jpgWe have linked in with a great charity called “The Developing Foundation” who supports families like ours to raise funds towards achieving their vision for kids with additional needs like Mikayla. Although the decision to help Mikayla in every way we can is easy, putting yourself out there enlisting help is not, and anyone who know us, would know that taking this step has not been an easy decision. We are hoping that the benefits for Mikayla however are BOUNDLESS, and that with the help of supporters, we can really help her achieve all that she is capable of, and keep her life as barrier free as possible.

The Developing Foundation gives our family the opportunity to raise funds to help us continue to provide Mikayla with opportunities to further develop her abilities, increase her independence, and find ways of participating in activities that she loves. The donations Mikayla receives will help us continue to work towards overcoming the challenges that cerebral palsy presents Mikayla every day, and give her every chance to “become all she can be and fully experience life”!

To help Mikayla achieve her goals and make a difference to her future, you can:

• Donate online by clicking the blue ‘DONATE NOW’ button under Mikayla’s photo at www.developingfoundation.org.au/family/mikayla and receive an automatic tax deductible receipt for donations $2 and over
• Share this information with your family, friends, colleagues, and anyone else you can think of to help us increase awareness of The Developing Foundation and our fundraising efforts to help Mikayla.
• Help us raise sponsorship for our team through participation at the Annual Brisbane Riverwalk event by collecting donations on our behalf using pre-printed receipts supplied by The Developing Foundation Inc.
• All donations of $2 or more are tax deductible. The Developing Foundation commits 90% of funds raised by or donated to our team, to these unmet needs. The remaining 10% is used by the charity to cover credit card charges, administration and support.
If you have a question for our team please email teammikayla@hotmail.com

Thank you for your support, it means a lot to us, and will help make a difference to Mikayla both now and to her future.
teammikayla_lores.jpg

YOU CAN BECOME ONE OF MIKAYLA’S ANGELS NOW BY MAKING A DONATION.

Go to www.developingfoundation.org.au/family/mikayla or contact us at teammikayla@hotmail.com for more information.

Mikayla and family

Mikayla’s Story

Life has been a challenge right from the start. I was born nearly 13 weeks early and weighed just 576grams (1lb4oz)! I was so small that my Dad’s wedding ring slipped easily onto my tiny arm like a bracelet! Due to my prematurity and very low birth weight, it was a very difficult time for my family and there were many things to overcome during the months I had to be in the hospital.

Today, I’m pretty much like other kids my age. I like to play, read, listen to music, do arts and crafts and enjoy the out of doors, and spend time with my friends. I really love animals, especially horses and dogs, and one day I would love to live on a farm and have lots of animals of my own!

Cerebral Palsy affects my balance, strength, and coordination. It makes many daily things difficult for me to do, and it means I need help with a lot of things…but it doesn’t stop me!

To help my muscles, bones, and joints, I need ongoing therapy, and lots of different equipment. As I grow and change, equipment often needs to be resized, modified or replaced, and I sure have grown a lot!
In May, I have the opportunity to do an intensive therapy course right here in Australia! Intensive treatment like this can help a lot, and is not readily available here. I will work on my movement patterns, stretching and strengthening, and improving my balance. It is very expensive to do, but it is a great opportunity.
As well as the Intensive therapy course, other things that Mikayla’s Team is raising funds for include my regular ongoing unfunded therapy and my equipment needs. This year this includes:-
• Gap funding for a bigger power wheelchair (I have outgrown my current one)
• New hi/lo supportive seating for use at home (I have outgrown my current one)
• A Kidwalk hands free standing and walking device (This will really help with my muscles and will allow me to do activities I love while helping my body)
• Regular Physiotherapy, Speech Therapy, and Occupational Therapy
• Therapeutic horse riding and other therapeutic interventions. (This is a great activity to activate and strengthen many of my muscles and riding horses is also really great fun!)
• A 24” modified tricycle (I have outgrown my current one)
• Home modifications for wheelchair access.
Each of these things will make an important difference to my life, and to my ability to do things I need to do, and those things I really enjoy.
With a lot of effort and determination, I continue to overcome many challenges. With your support and the continued love and help of those around me, I want to reach my potential, to be as independent as I can be, and to fully experience life!