An update on two incredible sisters, fighting to survive.
If you were following along in December, you’ll remember Natalie and Alice from my post Paying it Forward this Christmas.
Natalie and Alice both suffer from Leaky SCID, the same thing David Vetter (the “Bubble Boy”) suffered and died from back in the seventies.
I’ve been keeping a close eye on the Fish girls since they went in for their bone marrow transplants. Hopefully you have too, through their parents’ blog. The story has had many twists and turns, and life in the hospital has been both rough and beautiful to say the least.
In December, I asked you to please open up your hearts and your wallets for this family who would not only have to worry about the hospital stays and procedures, but would not be able to leave their home for the next year. This means no work, and no income. To save their daughters’ lives, Tyler and Lisy will have to devote 100% of their time and energy to keeping their daughters germ-free as a single microscopic anything could end their lives.
And man, did you come through. More than $8,000 was donated because of that post and the follow-up post Complications for Natalie and Alice.
On Monday I drove with Gary (Grandpa) to the hospital to see the girls. First I got to go see little Alice, who lay in bed thankful for any entertainment to pass the time.
She was scheduled to get her bone marrow transplant the next day, and was just finishing her last round of chemotherapy.
Tyler scooped her up for a picture. Tyler, a dad as real as they come, had long before shaved his head to support his two daughters who would both lose all their hair due to the chemotherapy.
Little Alice had a new Broviac line installed through her chest and into her heart for quick administration of medicine. From what Gary told me, one of the worst parts of these hospital stays has been the changing of the tape on both girls’ Broviac lines, a process that was both painful and often to help avoid infection.
I asked Alice if I could take a picture with her and her Daddy. She eyeballed my giant camera and when I asked her if she’d like to push the button, she jumped on the opportunity. I think she made me look pretty good!
From there, we headed over to Natalie’s room. She had received her transplant a couple of weeks prior. Her hair had long before fallen out, and the last thing she really wanted was another visitor.
Natalie was far more content diving into a children’s magazine than visiting with some guy she didn’t know. She didn’t remember me from previous encounters, as her short term memory was affected when she was put into a coma for a month and a half after contracting the H1n1 virus.
Tyler told me how kids at the hospital start getting really tired of being patronized and coddled. Natalie had passed that point long before.
Before I left, they pointed to the door where dozens of homemade clay magnets had been hung. “Take one,” she said. Natalie had hand-painted all of them to thank her visitors when they came.
I was immediately drawn to a heart-shaped magnet that said “LOVE,” and asked Natalie if that one would be okay to give to my son. For the first time I saw a smile escape her lips, not the easiest thing considering that the chemo has made her entire mouth turn into one giant bleeding canker sore.
After saying goodbye, we headed back into Alice’s room to grab our coats. She sat on the bed, playing on an iPad that some good soul had donated to them. It was hard leaving knowing that things were about to get real tough for this little one and her parents.
The next day she received her bone marrow transplant. The procedure was a success, now her little body just needs to take over and hopefully accept the new cells. Only time will tell.
I’ve fallen in love with these two little girls. I wish everyone could walk into a room and feel their spirits. Eh, who am I kidding, just walking by their rooms would about knock you over.
And so, today I ask you if we could all do even more. $8,000 is incredible, and other donations have come in, but we’ve barely scratched the surface of what it will take to save these girls’ lives and make this all possible. If you would part with five bucks, ten bucks, a hundred bucks, a thousand bucks… any amount at all, it would make a world of difference to this family.
After the original post, one reader wrote in that he usually doesn’t donate to random people, but after reading the post he had had a strong feeling that he should donate $500. And so he did. Others wrote in that they had literally no money, but would donate five or ten bucks because they knew how much these girls needed it. A lot of people have already made sacrifices to help save these girls’ lives.
Tyler and Lisy have both come and thanked me personally since the original post, both floored by your generosity. They are so thankful for what you’ve donated so far. They are so thankful for anything you can still donate.
It can’t be easy, suddenly needing to depend on the goodness of strangers to keep your children alive. Let’s show them just how good “strangers” can continue to be! Again, I ask you… how much are your own blessings worth to you? How much is your own children’s health worth to you? Any amount would be incredible.
The best way to donate is to send a payment through PayPal to [email protected]. It will go straight from PayPal into their trust fund account, it won’t pass through me at all. Just be sure to mark it as a personal transaction so that it doesn’t charge business fees.
You can also go into any Wells Fargo and tell them you’d like to make a donation to the “Fish Children Donation Fund.”
Finally, you can send them a payment directly to:
PMB #547
5406 West 1100 North Suite 103
Highland, UT 84003-8942
Love you all. Thanks so much.
Dan Pearce, Single Dad Laughing
Oh, and PS… if you’d like to send them a note to wish them well, please do so at the email address or mailing address above.
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Again comes the time were I hate being broke and barely providing for my kids. I literally don't have a dollar to my name but if I did I would definitely donor it. It sucks having a kid in the hospital. I died a little each day I had to say good bye to my little girl when she was in the NICU. I wish these girls are the luck in the world and a speedy recovery! I will be sharing this all over the place!
I usually don't donate to people I don't know, but I read your story, and as a father of an 18 month old little girl, it just broke my heart. We live on a very tight income right now, but I sent them what I could. You are truly a great man for sharing their story. I've been following your blog since one of my friends on Facebook linked to your "I'm Christian, unless your gay" post. I have to say that your blog is fast becoming one of my favorite things to read everyday. Keep it up!
I don't usally donate to things like this either but after reading about this and then seeing on a cousin's FB also, I came to find out that she actually knew this family. For December my kids went through all the items and toys they didn't "need" and they sold them all and donated the money to this family. It was a great experiance for them!
Hey Dan,
Do you happen to know if there is a 501(c)(3) non-profit set up for the family? My company (among others) does a 100% match to employees who donate to any charitable organization which meets that status, possibly giving further assistance to this lovely family, not to mention tax relief. Might be worth getting one set up if some generous legal eagle / tax expert would be willing to help with the setup? Just a thought :)
Thank you for sharing this heart-wrenching story -- you're a good guy, Dan. Sent a little something, meanwhile giving thanks for my healthy kids (Asha & Noah, about the same ages as Natalie & Alice), wishing the Fish family strength and smiles in the coming months.
ShannaChristmanFranzen Hey, as far as I know there is no 501c3 setup. I don't know if they are going to get one or not.
Single Dad LaughingShannaChristmanFranzen Please tell them to look at The Lighthouse Community. It's a group that will help with donations and are also 501 (c)3, so businesses can match the donations. http://www.thelighthousecommunity.org/Default.aspx...
once again you prove to everyone that you are whats right with this world. Thank you so much for sharing this with us. :)
In 1997 and 1998 I had my two boys with on deaths door, both had their lines..... when my oldest had his line removed after having it in for an extended period of time, he cried. He thought the line was part of him and he didn't understand why they were taking it away. You would have thought it was his arm or something. He cried "my line, my line" very dramatically. It had been a part of him for nearly two years. When we would arrive at the hospital they would say "oh it's the Mac's, your room is ready" as if it were a hotel... it is so difficult to live like this with two children in and out of the hospital, in home care, drug store, office visits, not to mention the one child at home.....while the other two are sick.... who takes care of her? Oh and how about the job.... do you go to work or stay for a procedure?? I feel for these parents and these kids and hope they see quick and lasting results. 15 years later we are still in and out of the hospital but only for the oldest and only for corrective bone surgeries.... something they told us would definitely last less than a year.... LOL it feels like a life time.... at least our kids are out of the woods. I just wanted to say thank you for helping this family, as I found when my kids were sick, we didn't have time to realize we needed help....having no family near to support us, we marched forward....we were very fortunate to have had the help we had, and it is very hard to ask for help.
Thank you for sharing this story. I will keep them in my thoughts and prayers. I am a mom of a little boy who has had cancer an two liver transacts and it is so nice to see others helping the little girls. It is really tough being. Stuck in the hospital. Thank you for putting the word out and helping this family. Sheila
Thank you for sharing this story. Sending what I can now via Paypal, and thinking of how I can support this amazing family in the months ahead. I'd be interested in donating my art or a commissioned painting to benefit the fund.
Conversation from Facebook
Ironically, it was a great Jew, rabbi Hillel, who best distilled the moral imperative grounding intactivism.
I read your blog yesterday regarding the girls fight. I live in houston and did not realize David lived right by here in Shenandoah until i was looking for a home in that area. small world. it made me think of the girls and think of david's and his parents fight. Thanks for bringing their story to light. The families spirit is infectious.
Thanks for the heads-up on a great cause, just sent them a letter ; )
Does this awesome family have a blog, or somewhere we can keep updated?
See what amazing things can happen when you love with both heart and mind? Such an awesome story to be apart of!
Wells Fargo in TX couldn't find the account. They need an account #.
Made a donation last month, and have shared this with my friends. These girls are on my "good thoughts/vibes list" :)
I just donated, I wish it was more but I can't not give something for these sweet babies. I will pray for them both. <3
Amazing story! Sharing and donating! We don't have much...but we'll share what we have! OOO
Sweet little muffins, I can hardly imagine what they're going through, and what their parents are dealing with. I'm an emotional wreck when my kids have tiny little injuries, so I can't even imagine seeing two of your babies going through something like that. What an emotional journey they're on. And just knowing that that little one is about to deal with some real hard times is breaking my heart. I'll be thinking about them, thanks for posting an update and I hope you'll continue to update us!
Thank you for your example of compassion! I cant imagine what they are all going through. I have two girls around their same ages. will keep them in my prayers, and help with donations. God bless.
I just read the update on the two beautiful girls. Has brought me to tears.
What an awesome story and what a strong family. I will definitely share and hopefully spread the word and of course donate.
I agree with the link.. Is there one that you have for them?? Would love to follow them
You bet Chris. http://fishesformarrowwishes.blogspot.com/
Beautiful girls. I read somewhere they have a blog? I'd love to follow. Do you have a link?
Tried to reply on your blog but that didn't work. Can you imagine having one child so sick? I can't. Now double that. Phew. These girls have been on my mind alot and I'll gladly help out again. Thankful for having a healthy little girl.
Jenna, please make it out to Fish Children Donation Fund. :)
Olivia, Alice is two. Natalie just turned eight.
Dan, I am going to mail a check in. Just curious who I should make it out to? Thanks
thank you and shared. gave what i could and wish i could give more.
lol it seems like I donate a lot to lost causes...mainly people that need help and they never get it together. Guess I go crazy sometimes thinking my help will change a man or a woman's life. And it never does because they dont desire change. Like I said I posted before I understood what was going on. Sorry :)
I think its awesome that you took time to make us aware. Please keep us informed!
Sharing as well. I'm glad you were able to meet them :) How old are the girls?
Tracy, you're awesome. What are you talking about. :)
I am sharing this with the hopes more people will donate! Also asked for prayers for them as well... Gonna send my donation in payday...
I hadn't read this story yet. What beautiful girls they are!
whoops so sorry missed the link post... Absolutely worth donating to, so sorry now I seem like a jerk
Amy, absolutely! You can send it or take it to the address listed in the post!
Or go insane, guess it depends on who your providing for and how.
I don't really have money to donate, but could I give them a handmade blanket? I have received yarn for free and would love to make them each a blanket to help keep warm if they can use it! Please let me know
I just signed up to be a bone marrow donor. Thanks for the beautiful posts.
I am going to see what we can donate. It wont be much considering we have huge medical bills also after loosing our precious baby Blake at 15 hours old on January 7th. This family will be in our thoughts and prayers.
Thank you for the wonderful post! I will definitely donate what I can. When my son had his brain surgeries, so many people pitched in to help us take so much time off work, and that was only like 6 weeks- I can't imagine a full year! My son also went through treatments that shut down his immune system, and I didn't leave the house for 3 months at a time. I feel so much for this family. I can't begin to imagine how hard and also wonderful this next year will be for them. Thank you again for sharing their story. :)
My favourite quote of all time..
ya made me tear up and made me remember how lucky i am to have three healthy kids even though my oldest has AHDH and gluten and casein sensitivity but i have two healthy beautiful girls....i pray that these two lovely ladies continue to do well and be able to go home and be happy healthy little girls!!
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Would I be allowed to send them packages to the address provided, my friends and I are wanting to send them a care package if at all possible! Please help us out!
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