Send Chloe to the NAPA centre

$24,830 of $60,000 goal

Raised by 223 people in 40 months
Hi, I'd like to introduce myself: I'm Madeleine, I have the priveledge of being a Mother to one of the most adorable, determined, sweetest little girls on the planet. She's an absolute gift. Chloe also has hypotonic cerebal palsy. She has low muscle tone which makes moving anything in her body really difficult, a cortical vision impairment and she is what we consider 'dyspraxic' which means Chloe knows what she wants to do, but she can't make her body do it. 
People with dyspraxia need to repeat things hundreds, if not thousands of times to be able to achieve what they're trying to do with relative ease. For Chloe what we've found is doing very intensive therapy helps her overcome this. For example, she has achieved walking in the past six months due to intensive, treadmil type training......she was able to practice stepping thousands and thousands of times before she was able to take her first steps 'for real' in every day life. The NAPA centre in Sydney (originally in Los Angeles) specialise in this type of therapy, and we'd love to be able to take her there. 
We are hoping to prepare a program for Chloe to spend 4 hours a day with therapists with the goals of: walking independently in unfamiliar environments, limiting her falls, being able to use her hands appropriately for play, eating independently (she would dearly love to feed herself), eating a wider variety of textures, and most of all this would all help her engage and play with children of a similar age: something she's desperate to do. Most children that attend the NAPA centre achieve 6-12 months of development per intensive 'session'.

Unfortunately these programs are really expensive. We are hoping to raise $15 000 to send us to Sydney for a three week intensive program sometime this year. We would be so very thankful for your support to help us help Chloe, and get her walking steadily and hopefully be able to communicate with us. I honestly believe her life will be set on a different path if we can help her achieve those goals.

**update: we are so very grateful to have reached our initial goal, and through further various fundraising opportunities we have now changed the goal with the hope of raising enough money for therapy for Chloe for a year at the NAPA centre. Thank you for your support, liking and sharing our page. M
+ Read More
We are currently in Sydney attending Chloe's second intensive lot of therapy at NAPA. I am very proud to report she is doing an absolutely amazing job. She has gotten stuck into therapy with the same therapists we had in the last intensive and we are all so impressed by her progress! We have had so many goals that it's hard to list them all but she has completed so many that we have had to add in new goals as she's already met most of the ones we set - which has far exceeded both our and the therapists expectations of what she could achieve. The biggest goal for us is that Chloe has been able to demonstrate her ability to understand and activate a switch to request something - so if you were to say 'Chloe hit the switch for what you want, do you want mango?? Or apricot?? And she can choose the one she does want. This little but enormous step opens doors for communication systems that scan the choices and she can then communicate her wants. It. Is. massive. Truth be told Ryan and I didn't know if she'd achieve this goal and we were hoping that perhaps by the end of the year we could give a communication system a go. It's just gone march. We are elated to say the least. She is balancing a million times better, saying a word, signing new words, managing stairs, finding her foot position on uneven surfaces and not falling over (not easy when you can't see!) and oh another major goal: sitting down and standing up at a table and chair. I thought we'd try having zero expectation but I know with certainty we will be setting up a table and chair for Chloe when we get home and that she will be able to manage it safely!! We can not believe Chloe's progress already and we are exactly half way through this intensive. We have all of you to thank. I know we've said it all before but it feels it will never be enough: thank you so much. She is so worth it - this is literally changing her life.

Madeleine & Ryan

P.S. If you haven't found us on Facebook you're more than welcome to follow 'Chloe's next step' and we will also keep you updated there. x
+ Read More
What a year!! We just wanted to drop everyone a note to say a massive Thank You for the donations towards Chloe’s therapy at the NAPA centre. We are booked to go again in February! This time we will do a few things differently as experience has taught us some things but we are so looking forward to it.

At the beginning of the year Chloe was falling over so much we were attending Emergency Departments every month for sutures or glue for wounds in her head. With a newborn and also 2 year old Kieren to take care of it was extremely difficult to keep Chloe safe and so very stressful. A definite low was sitting down to feed Amelia at PMH only to have Chloe fall and fracture her front tooth while waiting for an appointment. For Chloe this meant surgery to remove the remainder of the tooth. Unfortunately she had to wait 5 days with an exposed nerve before it was removed – she wouldn’t eat, and was barely maintaining her fluids. A massive positive is that we haven’t been to an ED for Chloe since we went to Sydney for NAPA in June! She got so much out of going and we can’t wait to see what she gets out of the next visit!

The last NAPA intensive really showed us that intensive therapy with specialist therapists is definitely the way to go for Chloe. At the moment she is walking around the house confidently. As she has low vision it’s hard for her if something is left on the floor. Outside she is not so confident and frequently falls over threshold steps, falls where surfaces change and just drops to the ground to avoid falling when she feels unsafe or not sure where she is. This is an excellent strategy……unless you’re trying to get Chloe to walk somewhere while wearing a one year old and also wrangling a three year old! This is one of our major goals for the first half of the year as it will free us up to go places without the need of someone else. You know how sometimes kids just need their Mum and a park? I’m looking forward to our first picnic with just the four of us, no wheelchair, no aids, no stress. No worrying about the surfaces and trying to remember every little step in the park and pre-empt what she’s going to have trouble with. This would also mean we could visit people a little more frequently than we do now! It’s hard when you’re invited somewhere and need to wait until you’re both free to be able to wrangle everyone safely and hopefully not break the place you’re visiting or Chloe!

Having said all of that, Chloe will be changing schools next year. There is a lovely school near us that appears to be purpose built for a child with a vision impairment. There are no threshold steps anywhere – even in the playground! For Chloe this means being independent without the need for someone to be a ‘catcher’. The current school has uneven gutters and cement work throughout it. The new school also has rounded tables in their classrooms. Chloe’s gained two scars on her cheek this year from falling into furniture with sharp edges. What really sold Chloe though was their hydrotherapy pool. She loves to swim! It was so nice to see her get around her new school with so much ease, and not need so much physical support to avoid hazards and obstacles. We think it has to be good for Chloe if she can relax in the environment, and she will be in a better position to learn when she’s not so focused on trying not to fall over. It is making us rethink our home design too but unfortunately that goal is further away right now. We aren’t sure if we should or could extensively renovate or possibly build something fit for purpose. We love where we are currently!

Chloe’s now communicating so much more and we have had the fortunate experience of finding a wonderful Speech therapist in Perth to help in between NAPA intensives. Chloe recently was able to convey to her Speechie that she didn’t like her singing. Coming from Chloe this was hilarious! Oh and she also won’t share chocolate. No way. Since she’s gotten a consistent pattern we are able to read what she’s trying to convey and she can answer yes/no questions. Even this relatively small gain is a huge win for Chloe. She’s able to partially fill her role as big sister, frequently telling Kieren ‘No’ with a shake of her head much to his annoyance. She is making so many more attempts to verbalise now and she is extremely interested in how your mouth moves when you’re speaking. With her low vision it often means her face is right in your face and her hands on or even in your mouth but we really don’t care, we’ll do whatever it takes. She is also telling us things by taking us by the hand somewhere. I still get a buzz seeing Chloe actually walk around the house but when she takes me somewhere by the hand (usually it’s food related but sometimes it’s to the front door – Mum take me OUT!!!) my heart melts.

Other big goals for Chloe in 2017? Really orientate herself in her environment: be able to sit on the lounge, get onto her chair at the table, in and out of the car, in and out of bed. All by herself. Really play and problem solve with appropriate toys. Be able to tell us what she’s thinking. Learn to feed herself (this would probably be Chloe’s highest priority – she is such an independent soul at heart and LOVES food). Learn to dress herself and select her clothes. Right now I give Chloe a choice of two or three things but it must drive her crazy. You can see how this goal list all interconnects: she needs better gross motor and fine motor skills, strategies to get around her vision impairment and an easy way to communicate. Chloe has soooo much potential but with so many needs and areas of priority the basic therapy she receives just isn’t enough. That said, I have recently returned to work part time to help this crazy adventure that we are on with this lovely girl (I have been on maternity leave but prior to this I was working weekends and evenings, so we could squeeze as much therapy into Chloe’s day as possible). I’m working perhaps a little more than I’d like to however we will do whatever it takes.

Right now Ryan and I have never been better, and for that we must thank each and every one of you who’s donated or shared this page. A massive thank you to our friend Troy who organised ‘Ride for Chloe’ and all of the riders that cycled about 200km one weekend in October. For us, psychologically the support has been overwhelming in such a literally heart warming way. We simply didn’t realise that so many people cared so much. Complete strangers to us have also showed they cared in so many different ways I can’t name them all within this already lengthy post. We really never expected that.

At the beginning of the year we really were in despair, so grateful Chloe had started to walk but so scared she was really going to give herself a life-threatening injury. So thank you, each and every one of you. The original goal was to change that course – and that’s certainly been achieved. Our broader goal was to change the course of her entire life. We know that by keeping on attending intensive therapy, exploring the use of technology for communication and sourcing appropriate toys for play Chloe is going to soar. I am excited to think of what I might be reflecting on this time next year.

A million thanks again although these words will never feel enough.

Madeleine & Ryan

Witchypoo Chloe
+ Read More
Today is the day! Ride for Chloe is about to start. There's an amazing group of people out riding in some awful weather today to support our beautiful Chloe! Tomorrow they will ride back hopefully in some slightly better weather! We will be at the Kalamunda pub at the end of the ride! Please come down, catch up and celebrate with us!
+ Read More
This week has probably been the hardest of my parenting career so far. Parenting a special needs child is tough to say the least. We feel like we've almost done it all - we've done anaesthetics, waited and waited and waited for horrible results that don't change things but do dictate the future more or less, we've done countless emergency room visits, sooo many specialist appointments, countless therapy appointments, I've had lots of head butts, hair pulls and some frustrated bites, we've done seriously choking at family dinners and messes that are not describable that need cleaning up. This week I've had to write an application for funding for support workers for us in the house - spell it out exactly like it is and it has been a leave your pride aside, soul destroying horrendous thing to say the least. I've cried and cried and I've not been sure I can go on. I'm a glass half full, focus on the positive, focus on the gains and focus on the potential parent. I'm not a misery guts, I'm never after the system to 'fix' us, and I never, ever feel like the world owes me something because I have the gift of a special needs child. I'm so grateful for all the support we've received in the crazy whirlwind we've had with our darling Chloe. So after an awful week - yet another week of sickness in the house (WHEN will winter be over???!!! ), very little sleep and literally being pushed to the brink by our disability system there is this........my beautiful angel sitting on the couch. She's sitting here after her shower, by herself, enjoying our company. 6 months ago she couldn't do this, before going to Napa she couldn't do this.

And this is why I can keep on keeping on.

She is amazing, progressing and learning something new every day. Ride for Chloe is on October 8th to raise funds to continue therapy for Chloe at Napa. If you can share our campaign and posts we would be most grateful. It is the single best thing we can do for Chloe and one visit has certainly changed the course of her year. We hope with relatively regular access we can change the course of her entire life. She has so much potential - everything helps.
+ Read More
Read a Previous Update
Janice Fairless
36 months ago

Every ones donation's have made a world of difference in only 1 visit to Sydney.Please keep on donating.

+ Read More
Deb Fitzpatrick
40 months ago

So delighted for you guys! Best of luck, gorgeous Chloe xx

+ Read More
Liz Wards
40 months ago

I'd live to donate, and will do when I can. But are you in an area with "Riding for Disabled"? The movement on the horse has helped many a child or adult with CP. Just a thought

+ Read More

$24,830 of $60,000 goal

Raised by 223 people in 40 months
Created March 20, 2016
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
$100
Anonymous
4 months ago
FC
$250
Federico Chiozzi
10 months ago
ER
$100
Emily Rodriguez
28 months ago

Much love from the Rodriguez family. We enjoy seeing your wonderful updates so very much. xo

$50
Anonymous
28 months ago
LH
$50
Lauren Harben
29 months ago
$100
Anonymous
30 months ago
$200
Anonymous
30 months ago
$50
Anonymous
30 months ago
$100
Anonymous
30 months ago
JH
$100
Jill Hill
30 months ago

How lucky Chloe is to have you both xx

Janice Fairless
36 months ago

Every ones donation's have made a world of difference in only 1 visit to Sydney.Please keep on donating.

+ Read More
Deb Fitzpatrick
40 months ago

So delighted for you guys! Best of luck, gorgeous Chloe xx

+ Read More
Liz Wards
40 months ago

I'd live to donate, and will do when I can. But are you in an area with "Riding for Disabled"? The movement on the horse has helped many a child or adult with CP. Just a thought

+ Read More
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.