Crystal, AJ, & Baby Walker

$9,658 of $10,000 goal

Raised by 190 people in 8 months
This fall Crystal and AJ's baby boy was diagnosed with Heterotaxy Syndrome. This is a rare birth defect that involves the heart and other organs. The beginning of the word (hetero-) means “different” and the end (–taxy) means “arrangement.” 

Crystal and AJ have had multiple appointments at Children's Hospital of Wisconsin in Milwaukee and have learned more about the diagnosis and options for their baby boy. They face a decision no parent plans on making. 
The first option is to proceed with surgeries to address the congenital heart defects of heterotaxy syndrome. The surgeries are often palliative in nature, as it's difficult to achieve normal anatomy. (This means the surgeries do not provide a long term cure for the heart defects). Unfortunately, these operations carry a poor prognosis and potential for poor quality of life.  Babies are often born with asplenia or polysplenia (no spleen or multiple spleens), liver abnormalities, and intestinal rotation issues. The presence and severity of additional defects are often unclear until after birth. 
The second option is to allow their baby boy to pass naturally after birth. 

Needless to say, unless you have been in this situation, the decision is unimaginable.  Regardless of what they choose, Crystal and AJ are faced with difficult days ahead. 
The emotional burden placed on them is impossible to take away. However I would give anything to make the next few months easier financially.  Whether funds go towards past or future medical bills, gas money, lost work wages, or the unthinkable task of a funeral, I'd like to do as much as possible. 

For those of you who don't know... AJ is my cousin, friend, and one of the best guys around.  And Crystal - she carries their baby boy with so much love and grace. She's truly become one strongest people I know.  I have no doubt they're going to be amazing parents, in whatever capacity that may be.  

I'd like to give them their space and privacy as much as possible during this time - I'm hoping to surprise them with this fundraiser for Christmas. It’ll include a little list of who contributed and any messages you’d like to send their way. Please feel free to reach out to me if you have any questions. 
God Bless you all, 

Photo by Amy Wohlt Photographyhttps://www.amywohlt.com

P.S. Heterotaxy facts were obtained from "Nick's Heart" - a foundation page I came across. I encourage you to visit it for more information -   https://www.nicksheart.org/info-facts-2 .

*Disclaimer: Monetary goal has been updated frequently simply to ensure that people feel free to donate and do not think the campaign is over. There is no specific goal, each donation and prayer helps. Expectations have already been far exceeded and Crystal and AJ are forever grateful. No bit of money will go to waste.

This campaign has been quite successful and I couldn't be happier about it. But GoFundMe asks that I include a little more information for the legitimacy of the account and to make sure I'm keeping everyone informed! ...

Who you are:
- My name is Gina Perez, I am the cousin of AJ Crooks. 

Where you're from:
-Green Bay Wisconsin

Your relationship to the parties you're raising funds for:
-Cousin of AJ Crooks who is the father of Walker. 

How the funds will be used (be specific as possible): 
-So far the funds have been used for lodging for Crystal and AJ, items for baby Walker (particularly unexpected expenses such as clothing, diapers, formula), meals for Crystal and AJ. Will also be used for Walker's funeral expenses, items for his memory as Crystal and AJ choose (photo albums, etc), medical bills from Prevea and Children's Hospital, and medical bills for his birth. Remaining funds may be donated in Walker's honor to relevant causes. 
All money goes directly to Crystal and AJ to use as they see fit. 

If you intend to withdraw the money, how you plan to send the funds to the parties you're raising money for or use the money on their behalf:
AJ is currently receiving the money via PayPal as it is deposited in to my checking account.  This decision was made by both AJ and Crystal. I have been transferring the money in the same increments as I receive it and there has been no problem with accessibility to it.  This has worked well up to this point.
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Walker got his wings yesterday.
If love could have kept him here, there's no doubt he'd be around. But a stronger love let him go, and he's full of breath in the arms of the Lord.
I'm eternally grateful to each and every one of you who made this a successful campaign, and helped to give Crystal and AJ a financial cushion. You all allowed them to focus and cherish all of this unexpected time with Walker. It's amazing how loved, and how perfect he was.
There's not a lot to say at a time like this. Continue to pray for AJ and Crystal. You all are wonderful.

Many thanks,

Tuesday, March 12, 2019
4:00 p.m. - 7:00 p.m
Service at 7:00 p.m
Lyndahl Funeral Home
1350 Lombardi Avenue

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Hello all -
Our little man is still hanging in there.
Crystal and AJ continue to cherish their time with Walker.
AJ did return to work last week but his employer has been accommodating and understand his current #1 priority is their little guy.
Walker has had a few difficult breathing episodes over the past week. This was new for them - and of course very difficult. As much time as they have to prepare for the inevitable they realized they will never be "ready." Fortunately Hospice continues to be a great resource and they have medication on hand in the case that Walker has any struggles related to his breathing and oxygenation.
After these episodes he so far has returned to his normal little self, eating well, interacting, and even beginning to smile at people.
As always, continue to keep these 3 in your thoughts of prayers. I hope you all realize how much of a difference you've made in a very difficult time - it's a pretty special thing.
Always grateful,
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Hi Everyone,
I just wanted to start off by apologizing for not updating this page a little more frequently. I certainly lost track of how fast has flown by.
The past month and a half has been crazy and unexpected. AJ and Crystal have had time with their baby boy that nobody thought they would. He couldn’t be more perfect and he certainly is a tough little guy.
While the time has been a blessing, the fact of the matter is that Walker’s congenital heart defects associated with his Heterotaxy Syndrome have not changed. For those who are interested - here are his specific cardiac abnormalities (as all cases are different):
- Complete atrioventricular canal with Tetralogy of Fallot
- Atretic pulmonary valve, pulmonary atresia
- Total anomalous pulmonary venous connection – infradiaphragmatic
- Tortuous patent ductus arteriosus.
This has resulted in Walker’s blood being “mixed”, essentially meaning that his fully oxygenated blood (right after going through the lungs) and his deoxygenated blood that’s returning to the heart mix together in the heart and vessels around it. Because of his he has always had low oxygenation levels and his body has adapted to this. He’s quite the fighter.
The heart defects are complex and while he has survived longer than expected it doesn’t change the long term prognosis or surgeries needed to lengthen his life. He had a repeat echocardiogram a few weeks ago with a Green Bay pediatric cardiologist which confirmed the same deficits.
Walker is blessed to have a wonderful physician on his Hospice team who has taken the time to learn about heterotaxy, and has been able to give Crystal and AJ an idea of what to expect going forward. The Hospice nurse visits them daily and are available at any time.
With all of this unexpected time - I cannot thank you all enough for your donations to support Crystal, AJ and Walker. The funds this campaign has raised have been SO helpful and have allowed Crystal and AJ to find living arrangements that they didn’t anticipate needing, buy formula, diapers, and any other unexpected necessities, and has made up for lost wages so that they can spend all their time snuggling and keeping their little guy happy. Several friends and family have also donated clothes, equipment, diapers, etc – they are so thankful for everybody.
Please continue to support and pray for Crystal and AJ. It’s hard to say how long this little guy still has – he’s certainly surprised everyone. Each day is a blessing, but unfortunately the hardest days are yet to come. Pray for them to continue cherishing every moment and that they continue to find peace in their decision - that Walker’s short life is full of warmth, comfort and constant cuddles.
Thank you again!
Warmest regards,
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Hello all,
I just thought I’d put a little update out there. Walker continues to stick around to spend time with his amazing parents. This was such an unexpected blessing.
AJ and Crystal had a discussion with Children’s Hospital on Monday. They reviewed the imaging from Saturday, confirmed that the same surgeries would have been required and the same prognosis was given. Additionally, the cardiologist who they spoke with felt quite bad that they didn’t prepare Crystal and AJ for the possibility of him surviving this long - regardless if it was a case of this being unexpected or unclear communication.
AJ and Crystal continue to care for and love Walker to pieces. You wouldn’t know this time was unexpected, they’re naturals. Hospice visits daily to keep up on Walker’s condition and answer any questions.
Please continue to pray for their strength and comfort. And thank you again to everybody for the support.
Warm Regards,
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$9,658 of $10,000 goal

Raised by 190 people in 8 months
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