fundraising – Patrick Hoopes

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.

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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.

“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!

Thank You

Before I say anything else in this blog, I need to begin by saying THANK YOU! Since we made the decision to adopt Patrick we have been overwhelmed by the show of generosity and support from everyone we know – and many we don’t. We’ve been the recipients of countless kindnesses and gifts including clothes, toys, blankets, and help with other baby needs for Patrick, help with meals, household chores, yardwork, and even completely redoing a room to be a nursery. You’ve been the listening ears, the helping hands, the friendly smiles, and the shoulders to cry on as we’ve gone through all this journey has taken us through over the past several months.

Some of the kind gestures are small things you may not remember and others have come at great personal sacrifice.

Raising Patrick, helping him grow in both body and spirit, making whatever time he has on this earth the very best it can be, and giving him every opportunity to live as long as he can… is the type of endeavor that requires an army of willing volunteers… and we are grateful to all of you who have joined in that effort. You have lightened our load. And you have bettered his life.

Amazingly, with all you do, I’m always being asked what more you can do.

So, for those of you who want something else… we are working now to raise money to cover expenses above and beyond what our insurance and savings can provide. On this website, you’ll find ideas or ways you can help – whether with a monetary donation or a few minutes of your time. My mom is our campaign coordinator and she can also help to point you in the right direction.

Children’s Organ Transplant Association

I wanted to take a minute to tell you about a group called theChildren’s Organ Transplant Association. This is a charitable organization devoted to making organ transplant available to children, regardless of financial circumstances.

The estimated price tag on a small bowel transplant is approximately $1 million. We are fortunate to have very good insurance and to be pretty solid financially right now. Nevertheless, every doctor’s visit, every trip to the E.R., and every new medication comes with a co-pay. And while we have an out-of-pocket maximum, it doesn’t apply to co-pays. Right now, that’s expensive, but manageable. After transplant, we are looking at doctors visits several times a week and about 50 medications at a time.

Besides the medical bills, an out-of-state transplant center brings its own expenses. We pay for transportation and hotels every time we go for an outpatient checkup. When transplant comes, we’ll need to book a flight at the very last minute, meaning steep airfare or, even more pricey, a charter flight to get to Seattle in the required 6-8 hours. Then we’re looking at splitting our income across 2 states for about 6 months as I stay with Patrick during his recovery while Brian works here at home.

If I think too much about it, the logistics of this make my head spin.

We’re doing all we can to save while times are good right now. Unfortunately, the more we put ourselves on solid ground, the more “needs-based” programs we are disqualified for.

Enter the Children’s Organ Transplant Association. COTA, as they call themselves, is a 501(c)3 charitable organization. Their purpose is to facilitate fundraising for children needing organ transplants. Funds raised are donated to COTA in Patrick’s behalf.. meaning they are set aside to help cover Patrick’s transplant related expenses.

These funds can help cover any of the costs I mentioned above. They cover anything related to the need for transplant (meaning all the medical stuff we’re doing now both in Salt Lake and in Seattle as well as, for example, medical expenses when he’s an adult that result from being transplanted.)

We have set up a fundraising campaign in Patrick’s name with COTA. It’s being organized by some of my family members and is staffed by family and friends. 100% of what is raised will go to COTA to cover transplant-related expenses. Donations are tax-deductible and some companies will match donations. On top of that, COTA has it’s own matching and incentive programs. COTA estimates we need to raise $70,000. Funds Patrick doesn’t use, for whatever reason will benefit other children.

I’m asked all the time what more people can do to help us. Well, this campaign could use help. It’s all run by volunteers, so if you have some time or ideas, then you can be of help to us. A training/planning meeting is planned for September 1st.