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Help for Jaxon and Axel

$18,107 of $30,000 goal

Raised by 148 people in 10 months
Created September 6, 2018
This fund is set up to help my nephew Chris and his wife Michelle, the parents of twins Axel and Jaxon, who were delivered April 26 at 27 weeks gestation, due to complications of a TTTS (Twin to Twin Transfusion Syndrome) pregnancy.  Both had Grade 4 brain bleeds, ROP (an eye condition which could affect their vision), hydrocephalus and Jaxon has hypertonia and may have cerebral palsy.   The NICU at Children's Hospital has been home since shortly after birth but after many surgeries and complications, it is looking like they will finally be going home soon.  Due to their many complex conditions, it will require both Michelle and Chris to look after them full-time, at least for the foreseeable future.  Chris has made the difficult decision to take a leave from work so that the twins can be given the best possible start in life.  In addition to the loss of income this will bring, there will be many additional  expenses that aren't covered.  First time parenthood should be a joyous and exciting experience, not a roller-coaster ride of uncertainty.  Please donate so that Chris and Michelle do not have the additional stress of worrying about their bills.   They have both been incredibly strong through all of this and no one is more deserving of help.  They are an incredible couple who I know would not ask for help but I have chosen to start this fund because I know how much they need the help and how grateful their whole family will be.  For more information on the struggles they have faced, see Michelle's blog:  the fightingirishmartins.com.  No amount is too small!
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I wanted to say such a huge thank you to everyone who has donated. Since coming back from our Toronto physio intensive trip, I have now enrolled the boys in private, weekly physio locally as well (starts in a few weeks) and have been able to purchase the gear we need to do our home exercises (a few hundred $ - a special chair, feeding/OT tools, arm and leg immobilizers, etc), as well as start saving for our next Toronto trip.

In addition to this GoFundMe, we have just refinanced our home to also free up some funds for their continued therapies for years to come. This is a tough move for us but we will do anything we can to help our boys succeed.

We are heading into an uncertain time as I go back to work in a few months after my maternity leave is over, but unsure of how much I will be able to do (can't put them in daycare), so every little bit helps and goes directly to the cost of the boys' physio and physio supplies. THANK YOU so much. ❤️
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Here is Michelle’s latest FB post...so you can see where your donations are going.
We had an amazing first week here in Toronto for the twins’ intensive physio and OT program. I’m so glad we took the plunge to do this. It’s completely opened my eyes that our public healthcare system a) doesn’t give an F about special needs kids, and b) is vastly behind the times.

Our team told us to not bother trying the things we’ve done here. Don’t bother feeding Jaxon, he can’t do it. Don’t bother practicing sitting, he can’t do it. Never mentioned weight bearing or SO MANY other things the boys are now doing.

Instead our public system says, “What colour would you like your son’s wheelchair to be?” (Yes a real conversation.)

When we get home, a lot will be changing. We’ll be spending $1,500 a month minimum on weekly private physio and monthly OT (ideally more is recommended, but that’s not possible for us). We will have to move out of our townhouse as there is no room for all the equipment we need (standing frames, mats, rollers, balls, walkers, etc) and no room to do these types of exercises in our small place. These costs will only increase and will be for years if not decades (lifelong).

And of course we will be doing as many future trips to Toronto as we can afford for these intensives.

It’s a lot to take in and a lot to prepare for. I will be even busier fitting in hours per day of the exercises and tools we are learning here (which has already been 1000x more useful than the last 8 months of public “physio”). Plus, trying to figure out how to pay for it all.

I know many of you don’t understand why we have to do all this or what the boys’ medical issues truly are. Be glad if you don’t. Be glad if you have a kid who can just be a kid instead of having to be put through all of this. I wish we could have a normal life instead of this shitshow.

However the reason we do this is to hopefully give the boys a SLIVER of independence some day. And we keep doing this because of what our doctors/public physios etc say. I’ll never forget back in March at a development review type appointment (where obviously the boys are not developing on target ), the doctor looked at us and praised us for continuing to work hard with the boys, saying, “Most parents give up by now.” A year in.

Why? ‘Cause it’s hard? Boohoo! I’ll never forget that comment. We may not be able to afford the best care, but at least we don’t give up!
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Thanks to everyone for your generous donations and support for Michelle and Chris and the twins. At just over a year (chronological age), Jaxon and Axel still have numerous medical issues: both are still tube fed and have problems with reflux and vomiting, both have been diagnosed with cerebral palsy and have motor issues that require daily physio, Jaxon has a brain shunt for his hydrocephalus and is visually impaired. The fact that Michelle is STILL pumping breast milk after more than a year is testament to the fact that these amazing parents are doing everything they can to ensure that the boys get their best start in life. Unfortunately the government funding provided just does not go far enough to meet all their needs and Michelle and Chris are currently in Toronto for 2 weeks where the twins are receiving specialized physio. The treatment alone is $5000, not to mention travel expenses. Michelle and Chris will need to continue working with them at home and the twins will need follow-up treatments in Toronto. Needless to say, they can still use help so if you have been meaning to donate but haven’t yet, now is your chance to do it. If you have already donated and can find it in your heart to give a little more, please do. These special little guys deserve it!
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Our miracle twins made the news again!
https://www.facebook.com/570769704/posts/10156641610644705/
Please keep sharing and spreading the word!
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$18,107 of $30,000 goal

Raised by 148 people in 10 months
Created September 6, 2018
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DC
$50
Deb Chapple
14 hours ago
DC
$50
Deb Chapple
29 days ago
LH
$200
Linnea Hofsten
29 days ago
PM
$250
Parasto Momeni
1 month ago
AC
$10
Anjanette Call
1 month ago
$100
Anonymous
1 month ago
$50
Anonymous
1 month ago
$25
Cristina Diaz
1 month ago
$10
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