Why do we fundraise through COTA?


Online fundraising is pretty common these days. It is very easy to set up a campaign. And we, as you know, are very tech minded and internet savvy. So why, in the era of FirstGiving and GoFundMe, Kickstarter and more did we decide to have our fundraising go through the Children’s Organ Transplant Association?

The answer is that this non-profit offers more than just an online place to collect donations. Here are a few reasons why we love COTA.

1. They are a non-profit. COTA is a 501(3)(c) charity. That means that donations are tax-deductible for the giver.

2. Donations can be matched.  They can work with many company’s donation matching programs. If you give, it’s possible your employer will also give. COTA also matched donations themselves.

3. They help fundraise. They act as mentors in fundraising efforts. So our local volunteers have had help in planning and executing events. They have helped publish press releases. They provided the means to do cell phone and printer cartridge recycling. (Yes, we still accept those.) And miracle makers we don’t even know have put together events benefiting our family.

4. They provide other support, too. I can’t tell you how many phone calls I have had with COTA staff. They listen when we need someone to talk to. And since transplant? I can’t call the without them trying to find one more way that they can offer help.

5. They keep donations safe. One of the drawbacks of fundraising is that large sums of money suddenly hitting your bank account can count against you in terms of taxes and other benefits. Fundraising through COTA makes it so we only deposit the money into our own accounts as we need it. Also, there is some security in knowing that there isn’t a risk of a company going bankrupt and disappearing with the donations.

6. The money is earmarked for transplant. This helps us a lot in our budgeting. Anything related to transplant, be it pre-transplant medical expenses, current and future medical bills, lodging, food, transportation, etc. is all covered. 100% of the funds raised are used for transplant expenses. The dollar figure you see on Patrick’s fundraising page is how much has been raised on his behalf and how much he can claim.

7. The donations help other families, too. Now, make no mistake. Money raised in Patrick’s behalf isn’t going to be spent in other ways. This is something people ask a lot. “Wouldn’t it be better to just give you the cash so we know it went to you?” We can claim the full amount donated as we need it. However, we also like knowing that if, by some unexpected chance, Patrick didn’t need all of the money raised for his own transplant expenses, that they would go to another child. We consider these donations sacred funds and wouldn’t dream of using them in another way.

Today is Giving Tuesday. A chance to take a break from the commercialism of Black Friday and Cyber Monday and give back to the community. We know that a lot of people want to offer help and that we are far away and there isn’t a lot that can be done. But helping us raise funds for Patrick’s transplant-related expenses is something that you can do. We’ve raised a little more than 30% of our goal.

This venture is definitely not a cheap one. Prescription co-pays alone are about $200 a month. That’s not including the costs of living out of the hospital or flying Brian back and forth. And this is going to be a lifetime venture. So every little bit helps.

To make a donation, just go to http://cota.donorpages.com/PatientOnlineDonation/COTAforPatrickH/ and click on the “Donate Now” link. If you’re not tech savvy like us, donations can be mailed. Just go to http://cota.org/userfiles/CheckDonationForm.pdf to download a donation form and get instructions.

So why did the blog change?


Thought I'd spice up this post with pictures from our visit to Dream Night at Hogle Zoo, courtesy of HopeKids. Patrick asked me to get out my camera in the seal-viewing area and struck this pose.
Thought I’d spice up this post with pictures from our visit to Dream Night at Hogle Zoo, courtesy of HopeKids. Patrick asked me to get out my camera in the seal-viewing area and struck this pose.

Thank you so much for your patience with the transition over to the new blog page. I see that some of you have already made it along with e-mail subscriptions and all. I added a new subscription for anyone who had been subscribed to cotaforpatrickh.com. You should have gotten an e-mail from WordPress prompting you to confirm. If you got it right, then you got a notification of this post in your e-mail.

Anyway, I’ve been asked a few times a question that I want to clarify. Some people are wondering if the switch means that we are no longer fundraising with COTA.

The answer is, OF COURSE we are still working with COTA. They have been a wonderful support to us. We’ve raised $21,921.81 so far which is AMAZING! And they have still been an amazing resource for us. I can’t even put into words how kind and concerned they are every time I talk to them.

So why the change?

A couple of weeks ago, a COTA representative called me because the website domain was up for renewal. It has been 4 years since we started fundraising. Can you believe that? 4 YEARS!

4 years ago, COTA asked me to move our blog onto their web platform and servers so that they could help us make sure that our online fundraising presence followed all of the rules and regulations required by the 501(c)3 status. 4 years ago, we had a committee planning monthly fundraising events. We were new and required a lot of supervision.


But now, well, we’ve been at this for some time. We’re a little more seasoned. We don’t need someone to screen all the posts to make sure we got the verbiage for fundraising right. Our campaign has gotten smaller and a little less busy.

And so, we can follow a little bit more lenient set of rules. My personal blog no longer is required to be hosted on their servers.

If you remember, back in the day when I had time for personal hobbies, I was dabbling quite a bit in graphic and web design. I have been itching for years to get control of my own blog design back. To get features like tagging and categories and an automatic Facebook and Twitter feed. (And a smoother CMS to work with so that posting blogs would feel like less of a chore and I’d do it more often.) I am thrilled to have the option to post pictures and quick blog entries from an app in my phone. I think I’ll do a better job sharing with you more often. And, as icing on the cake, I could save COTA the cost of maintaining my domain and hosting so that that annual fee could go to helping another family with their transplant expenses.


So, long story short, I jumped at the chance. I’ve been backing up this blog for the past couple of years, but I decided to take advantage of having to sit up half the night waiting to give antibiotic doses and get the rest of the blog moved. Pulled it off in just a matter of days.

And here we are.

We have not given up on COTA and they have not given up on us. You can still make donations through the links on the top right-hand side of the page. We are still collecting used cell phones and ink and toner cartridges and other assorted electronic devices. And we are still open to putting together big fundraising events, if you have any great ideas. In fact, I’m thinking maybe it’s time for a new batch of “Got Guts?” shirts, since we’ve got a new domain. (That project may take me days, or weeks, or months.. but it’s in my little head.)

And I am SO VERY excited to be able to continue to share the story of our journey with you at this, our new blogging home.

If you haven’t subscribed already, there’s a box in the sidebar on the right.

Or you can follow the twitter feed at https://twitter.com/HoopesPatrick

Or the facebook page at https://www.facebook.com/PatricksGotGuts

An evening to remember

It’s been two weeks since Patrick’s Hope Concert and I haven’t blogged about it yet because, well, how do you even try to capture something like that? It was something we’ll never EVER forget!

Friends, families and even strangers came together in amazing ways.

Brian met the sound crew and musicians at 1:00 p.m. I think he had a great time tagging along during sound checks.

Meanwhile, our wonderful friends and family worked to set up the silent auction.

It was after 5 when I got Patrick’s afternoon medical care taken care of and got back to the school where the concert was being held. What I found was amazing! All the auction donations displayed on tables looked so different than they have sitting in my basement. The community was so generous! There was far more there than I’d realized had been given.

The auditorium seemed to have been transformed. When we toured the school months ago it had seemed like a shabby school auditorium. Now, with instruments on the stage and Patrick’s image filling the wall, it looked like a concert hall.

Before long, volunteers and guests started arriving. Soon the lobby was shoulder to shoulder with people we love. Our adoption caseworker was there. So were some of Patrick’s favorite nurses. Co-workers. Friends from church. Family. His doctor. I wish there had been more time so we could have visited with all of you.

We decided to watch the concert from the balcony. (It wasn’t officially open).  We wanted Patrick to have lots of room.. and to watch the concert where it wouldn’t matter if the applause scared him or if he was too sleepy. This was a good thing because his only nap was 11 a.m. and the concert started just half an hour before bedtime.

We owe a huge thank you to Paul Cardall for all he did to put together an amazing concert! He had me crying from the start. The other musicians deserve a thank you, too.. For giving their time, talent, and even equipment to make the night work. So thank you Charley, Sam, Mindy, Steven, Marshall, Kevin.. and to the other musicians who I may not have met but who came and shared their time and talents.

It was so fun to see everyone in Patrick’s “Got Guts?” t-shirts! Just one more thing that made us realize that this night really was for our family!

A big thanks is also owed to Seth Mitchell who worked miracles in getting us a concert quality sound system, donated no less, and a crew of very talented engineers who mixed sound, ran lighting, and otherwise put together the look and feel of the concert. We couldn’t have done it without you!

While I’m expressing thanks..Thank you to my mom who put so much time and effort into pulling this event off! Neither one of us knew what we were doing, but you certainly stepped up and figured it out. Thanks to the rest of our friends and family. Dad, Dick, Phyllis, Jill, Cindy, Michelle, Jay and friends Kirstie and Tifanie who came to meeting after meeting and worked to pull everything together. Thanks to the many friends and family members who came to staff the event. Thanks for keeping me sane!

Thanks to the businesses and individuals who gave to the silent auction. I was touched with each donation that would show up. I wish there was space to put all the stories here.. as almost every item has a story behind it.

And finally.. thanks to all of you who came to share the evening with us! In that big auditorium, we looked few in number.. but there were several hundred of you there. The event definitely made a difference! We more than doubled the donations received thus far. I don’t dare publish a number, because my doorbell still is ringing with people giving more.

Beyond helping with Patrick’s transplant fund, though… You helped us a lot by heart, too! Knowing that there are so many of you who would give up a Saturday evening to come and celebrate Patrick’s life with us was means so much!

This has been a tremendous journey with Patrick. Each day with him is a miracle. I feel as though he’s outlived his expiration date time and again. It was wonderful to be able to take a night and celebrate that miracle with the people who mean the most to us.

What we do when we’re not in the hospital

I’m almost afraid I’ll jinx us by writing this post. Patrick finished his course of antibiotics and antifungals a week ago. So far, so good. We’ve been settling into life at home in this break that the super anti-infection medications have given us.

Patrick seems to be on a mission to make up for all of the time and opportunity his illness have caused him. So, I’m doing all I can to support him and help him to be successful in doing this. Last fall, he couldn’t roll over. Now he’s crawling, climbing stairs, and cruising along furniture. Because he’s in such a focused, productive period of development right now, we’ve called in the troops to help him to accomplish his goals.

He’s got 5 therapists right now, making for a total of about 10 therapy visits a month. We’re working on speech, motor skills, feeding, and more. It seems that every time we meet with one of these experts, Patrick learns some new and amazing skill from the visit. After a little bit of reinforcement at home, he’s doing things that had previously seemed impossible, or at least a long, long way off.

Of course, a more active, mobile, and as one physical therapist describes him “impulsive” Patrick requires much more supervision. He breaks a little connector piece in his IV tubing a minimum of 3 times a week. And a backpack on wheels is not capable of following him up the stairs. We have many more bumps and bruises than we used to have. Patrick’s a big braver sometimes than his skills can allow for and I don’t think it would be a normal day without him falling and bonking his head on something. But, as tired as I am from chasing all the time, I wouldn’t have it any other way.

Last week we made a change in his IV therapy. Once a day now, he gets a one hour “break” from his TPN. No tubes. No pumps. I just disconnect him, put up the baby gates, and let him go. He plays and plays and then we reconnect the IV’s and the combination of activity and change in blood sugar knock him out completely. The only problem with this plan is that he’s taken to napping as late as 7 p.m.

Being at home with an easier medication regimen (just 2 oral meds and two nutritional supplements given morning and night) has actually given us time to do other things like cooking or playing and working in the yard or  taking care of the amazing friends who’ve taken such good care of us. I’ve had time to really dive into plans for the upcoming benefit concert (which sound more and more amazing by the day!) One of these days, I’ll even catch up on the ironing. (This is a little bit thwarted by the fact that Patrick really likes to stand holding onto the ironing board.)

It’s so nice to go to bed at the end of the day exhausted from a day of work around the house and playing with my little boy. It’s been a treat to be at home with my family and friends nearby. Things are good right now and we feel very, very blessed. It can’t be this way forever. Until Patrick’s transplant, there will always be another hospitalization around the corner. But we are grateful for this little moment of peace.

“Pennies for Patrick” – Edison Elementary

For the past month, Edison Elementary in Salt Lake has been doing a fundraising drive called “Pennies for Patrick.”

Today, they asked for Patrick and his family to come and be interviewed for their morning school news. What a treat this visit was! We got to meet the 5th grade class who’s been spearheading the fundraising efforts. (Pictured above).

I was amazed at how much they knew about Patrick already. And at how well thought out their questions were. They wanted to know about his TPN. (They knew it by name). And why he needed his nutrition to go to his heart instead of his belly.

Two kids took us to the faculty lounge where they did an interview that couldn’t have lasted more than 2 minutes. It was so well rehearsed, though, and very professional. When we told the kids that Brian had gone to school here years ago, they were pretty excited. But when the camera’s rolled, it was all business.

All of the kids were so excited to meet Patrick! Brian’s mom is the secretary at this school so some kids put 2 and 2 together when they saw her with him. We started to hear “Is that Patrick?” whispered as soon as we entered the halls. Soon, kids were chasing us down the halls to be able to meet him.

My favorite quote of the day was from a little hispanic girl who said, “I thought he was all white. But he looks a little brown.” In school where the “minority” population is the majority, it was nice that Patrick, with his Korean features, fit right in.

The generosity and kind-heartedness of these children is amazing! For weeks, they’ve been sneaking in before school to put money into donation boxes. One teacher lifted theirs today and struggled under the weight.

I met a girl who put together a yard sale all by herself to collect money for Patrick. She came to school with a jar full of cash she collected. She told me today, “I knew a little girl who was 8-months-old who was sick and my church helped her. When I heard about Patrick, I wanted to help. I like helping babies. I want to be a doctor when I grow up.”

Pennies for Patrick was scheduled to end last week. The school voted to extend it till the end of this month, though, because they were having such a good time.

My heart was so touched. I wanted to cry, but couldn’t wipe the smile off my face as we talked with all of these children. Edison is not in a wealthy neighborhood. Many of these families don’t have much themselves. But they are so proud to be giving to help our son.

Thank you Edison Elementary!

Concert announcement

I hinted at this a month ago. Some amazing things have come together.

We are excited to announce that a benefit concert in Patrick’s behalf has been scheduled for May 22, 2010.

The list of performers is really exciting. They’ll include: Paul Cardall – pianist and transplant recipient, Sam Payne – singer and guitarist, Mindy Gledhill – singer,  Steven Sharp Nelson – cellist, and Charley Jenkins – country singer, guitarist. I’ve heard all of these performers in concert before and it should be a spectacular show!

The concert is scheduled for 7:00 p.m. on Saturday, May 22 at Eisenhower Jr. High, which seats only about 1000 people. This smaller venue should give the concert a bit more of an intimate feel.

A silent auction will be held starting at 6:00 p.m. It will close at intermission. Donations so far include tickets to sporting events, plays and concerts; gift certificates for river runs, ski lift passes, hotel stays, spa treatments and more; various gifts and gift baskets from local businesses; signed artist prints; beautiful handmade gifts; and much, much more. We are actually still looking for good silent auction ideas. If you’d like to contribute or have a lead you think would be worth following, let me know.

Planning this event has been a once-in-a-lifetime experience! It’s been a humbling experience to see the outreach of generosity and kindness from the community.

I’m sure it will be an evening never to be forgotten.

Tickets are on sale here. Be aware that, since our venue is small, they might sell out fast.

The waiting game

It’s 10 minutes past midnight and I’m sitting up waiting for Patrick to fall asleep again after being woken for vitals just moments after finally drifting off to sleep. This was the 4th nurse we’ve had in 12 hours.. That’s right, a new nurse for every set of vitals. And it’s making me homesick.

Patrick hasn’t been himself all weekend. He had low-grade fevers and was more irritable than normal. Finally, yesterday morning I gave in and called to request blood cultures. I was guessing that he had an ear infection or some other ordinary childhood illness.. But as it turns out, he’s got another infection.  Yesterday’s cultures grew a bacteria that so far is relatively similar to the one that caused his infection a month ago.

And so now we’re playing the waiting game. We won’t know until sometime tomorrow (or is it today?) whether or not the bacteria is the same. If it is, the question becomes why didn’t it go away before and what can be done now to get rid of it. In the meantime, they’re giving IV antibiotics that I’m hoping will help him feel better soon.

He’s really not acting all that sick. This is good news as it means that we can probably treat the infection more easily. It does mean he’s a little more stir crazy because he wants to be crawling and exploring like he can at home. A crib and a playmat are just don’t seem like enough surface area to him.

That it’s RSV season makes this a unique hospital stay. Because the Infant Unit is full with babies sick with RSV. We’re tucked away in a corner of the Children’s Surgical Unit. It’s quiet here… much more peaceful than the Infant Unit in respiratory season. We’re getting to know a whole new set of nurses which can be disorienting.. especially since they rarely get babies here. But Patrick easily wraps any nurse around his little finger, so we’ll have friends here soon, I’m sure.

I’m hoping that the day will bring enough information that we’ll be able to end the waiting period and move on to a treatment plan. When I know more, I’ll try to put it here on the blog.

On a different note – any of you out there reading this post who haven’t done so already – please visit the “Activities and Events” page. Click on “Five for February” and send the message on that page to 5 people who you think would donate or forward the message or both. We have been stuck just under the $5000 mark for some time now. We only need 8 people to give $5 and we’ll cross that threshhold.