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Aguillon Family Medical Fund

$14,161 of $18,000 goal

Raised by 234 people in 10 months
Created March 12, 2018
Kelly Webber
on behalf of Antonio Aguillon
"Leo, my 2.5 year old son, has been in the hospital since Friday night (3/9/18). He was admitted to Spectrum Health Children's Hospital with pneumonia. That's the good news.

After they did an xray and CT scan, they discovered he has a rare disease called Gorham Stout Disease (GSD), which is basically eating away at his bones. Half of his left rib cage has already dissolved. I will be out Monday and Tuesday, while the doctors figure out possible treatment options and care for him going forward. The disease is so rare that only 300 cases have been reported world wide. As of now, there is no cure for it. No one at Spectrum really knows the best way to treat it since they've never had a case of GSD. Spectrum Health staff will be reaching out to Boston's Children's Hospital, the leading research hospital on this type of disease, first thing Monday morning to consult them on Leo's case.

In the short term, I am hoping the doctors let us go home once the pneumonia is under control. I have no idea what long term care will look like at this point.

Your thoughts and prayers are welcome and appreciated."


As colleagues of Antonio, we are seeking donations to support the medical needs and travel expenses for his son.
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Update 11
Posted by Kelly Webber
6 months ago
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Thank you to all of the generous donors! Antonio will soon be closing down this GoFundMe page, further updates regarding Leo's condition can be followed at his Facebook page:

https://www.facebook.com/LeosGSDFight/
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Update 10
Posted by Kelly Webber
7 months ago
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We are home!!!

Hello all, I would like to start this update by saying THANK YOU to all of those who sent their good wishes, positive thoughts, and prayers. THANK YOU to those who came to visit and brought us food (once or many times). And THANK YOU to those of you who donated to our Gofundme page (once or multiple times). Thank you all for your support during our inpatient stay at Helen Devos Children’s Hospital. In total, we were there for just over 12 weeks. We were released from the hospital last week Wednesday
The work needed to take care of Leo at home is extensive, but maganable. He is on six different medications, still has an NG tube (for formula and meds), and a central IV line that has to be flushed once a day. His left lung is pretty much collapsed so he is relying almost entirely on his right lung. Due to his medical condition and medication, he is also immunocompromised. It looks like this is going to be our new normal for a while.
We will be closing this gofundme page at the end of the month. Again, thank you for all of the donations as well as the moral support and encouraging comments. There aren’t enough words to express how grateful we are and how helpful all of your donations have been. I will also stop posting updates on my Facebook wall at the end of the month. However, I will create a Facebook page and post regular updates there. If you wish to continue receiving updates about Leo’s condition, you are welcome to “opt in” by “liking” his facebook page (once published). Before the Gofundme page is closed, I will share the link to the facebook page with all of you here.
One more thing, we have been home for nine days now. Leo is still going strong. Our next outpatient appointment is Tuesday.



--
Antonio Aguillon-Huerta.
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Update 9
Posted by Kelly Webber
8 months ago
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Hello all,

So the reason I haven’t posted an update on Leo’s condition for almost a month is that there wasn’t anything really new to share. Leo has been stabilized. However, we seem to have hit a plateau. We’ve been stuck on this state for over three weeks now. I am happy that he’s not getting worse, but I don’t feel comfortable taking him home with an NG tube, drainage tube, and IV line. Especially, when his left lung is still partially collapsed.

The options we have at this point are 1) Go home with the feeding/medicine tube, the chest tube, and the IV line. The maintenance required to take care of all these things is significant. 2) Submit Leo to a risky procedure with only 30% chance of success in an attempt to seal leaky areas in his chest cavity. Which, if successful, could allow us to remove the drainage tube in the future.

That is the decision we need to make over the next couple of days.
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Update 8
Posted by Kelly Webber
8 months ago
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Here is a new update about Leo. Let's start with the good news. His chest tube output has been consistently low for the last few days, which is good. He has regained most of his strength. His physical therapy is going good, he can now do just about anything they ask him to. His doctor feels the treatment is beginning to work, based how he looks and the low chyle drainage.

On the not so good side, his doctor recommended doing a full body bone survey earlier this week. This bone survey would rule out or confirm additional damage to his bones. The survey revealed that Leo also had damage to his left arm, his skull, and his spine. The damage has not affected his motor skills and according to his doctors, is not extensive. However, there is more damage than what we had originally thought. They also found cysts on his spleen this week. Leo will continue to be treated with the same medications for the vanishing bone disease, which should help slow or stop the damage to all of the affected bones. As for the cysts on his spleen, the doctor does not recommend taking any action at this time.

Your positive thoughts and prayers continue to be welcome and highly appreciated.
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$14,161 of $18,000 goal

Raised by 234 people in 10 months
Created March 12, 2018
Kelly Webber
on behalf of Antonio Aguillon
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