ARPKD/CHF

This Wall Street Journal article is about a family facing the same disease that Garty and Joshua have been diagnosed with. It is so disturbing to realize that our boys' birthmother would probably have been advised to abort had she received prenatal care in the US with our current technology. It is also frightening to read the account of this poor child's health, knowing that it is only a matter of time until our sons' health will likely deteriorate. However, it makes me pause to realize that so little is known about their disease, and even this child's diagnosis is now in question. We are blessed that both boys apparently have mild cases of the disease, but the long term prognosis is still unpleasant. We are thankful for the ARPKD/CHF Alliance, a non-profit organization committed to research, education, and advocacy on behalf of those with this unusual disease. We are also thankful that we live close to Children's Hospital of Philadelphia where the head of the nephrology department has conducted a significant percentage of the world's research on ARPKD/CHF.

the count

Thus far we've raised $281 and a very heavy bucket of change (we won't be counting that until the end) for our Kids Walking Kids Home project. If you still want to make a donation, we'll be collecting through October 22. You have 5 days left, and every donation makes a difference. You can give the money to us or donate online to our walk. If you go to the donation page, make sure you scroll down to the donate button below our family's picture so "our" boy is helped by your gift.

kids walking kids home: part 2

We found a cool little waterfall that would have been even cooler if it were not so dry. Joshua, Patience, and I climbed around on the rocks after a short snack break.

Toward the end of the walk each of the kids had a turn to ride on Daddy's shoulders.

A kind man who passed us on his bike offered to take our picture when we arrived at the end of our journey.

We enjoyed freshly baked chocolate oatmeal bars as a sweet reward for our efforts.

Tonight I'm going to count our donations so I can give a fundraising update tomorrow to let you all know how we're doing. It's not too late to change a little boy's life!

kids walking kids home: part 1

We walked 0.6 miles from our house to the trailhead where this sign told us we were about 1/8 of the way to Valley Forge. That's when Joshua let us know his legs were tired.

We had occasional views of the river.

Joshua and Patience each got 2 strategically timed short rides in the stroller to break up the walking.

Not far past the halfway mark we found a water fountain to get drinks and splash each other a bit.

quick report

We're home! We made a last minute change and walked to the trail from our house, so we walked a total distance of 4.2 miles in 2 hours and 26 minutes. We were a bit concerned when Joshua started whining about being tired at 0.6 miles, but the kids did really well overall. More details with pictures and video will be coming Sunday night or Monday morning.

today's the big day

If you don't know about our family's Kids Walking Kids Home walk today, it's because we don't like you at all. Or maybe it's just because I missed your name on the mass email I hurriedly sent out last Saturday and haven't had time to go back and check who I sent it to. It's hard to say, but don't get all paranoid about it. I'd be happy to send the email to you now if you let me know I missed you.

Anyway, there's a lot of excitement at our house this morning. It's a gorgeous fall day, and the kids are so excited to help a little Ethiopian boy come home to his new family and the blessing of good health care. We're headed out after lunch. Tomorrow or Monday we'll post pictures from our 3.5 mile trek, but for now I wanted to share a little more about why our family committed to this fundraising opportunity. It's definitely not because we're bored and couldn't think of any other ways to fill our fall weekends.

For several years now I've been following the personal story of a family who adopted a little girl with serious medical needs from our orphanage in Liberia. Their adoption story is full of drama, much more than ours. I've always been impressed by the sacrifices they've made out of love for God and an adorable little girl. Not long ago they decided to adopt again. This time they chose an HIV+ boy from Ethiopia whose face makes my heart melt. Through that process, they became more and more passionate about HIV orphan care and loving the truly hopeless. Out of this passion was born From HIV to Home.

Every year tons of new non-profit organizations emerge in America. Many of them flounder and fail over time because passion alone isn't enough to build an organization. However, I believe that Jennifer has what it takes to build a strong organization that will "pave a road home for the world's HIV-affected orphans, particularly for those children who are themselves HIV+." In a short time, HIV to Home is already making an impact. Jennifer knows that adoption won't solve the HIV crisis in Africa. In a just world, the amazing HIV treatments available here in the US would also be available throughout Africa, allowing parents to stay alive and raise their kids. But we don't live in a just world. Parents and children are dying at an alarming rate all over Africa, so adoption is a tiny bandaid that can bring hope to one child at a time.

We know that our little family can't save the world, but today we have the chance to help one 3-year-old Ethiopian boy and one American family find each other and be blessed through the love they will share. That's enough to bring joy to our hearts and tears to my eyes.

recovery weekend

After a long and exhausting week following the death of Peter's grandfather, we unwound on Saturday with Mom and Bob at the corn maze near their house. They had lots of simple but fun fall-themed activities for the kids. A good time was had by all. We even ran into our friend Michelle and her kids after not seeing them for a year!

giddy

That's the only word to accurately describe Patience when I pick her up from preschool. She loves it. The first day she couldn't stop talking about Abby. They are the best of friends. Most days Patience is so excited to tell me about school that she sounds like she's going to hyperventilate before we walk 30 feet to our car. We're pretty sure this year is going to be huge for her.