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April 13th, 2009, 03:20 PM #1Cystic Fibrosis Great Strides Fundraiser
As many of you know our youngest grandson Leland has Cystic Fibrosis. He's been in the hospital for a total of around 3 weeks since he was born in December. Thanks to God, our awesome ABW friends and family, the Cystic Fibrosis Foundation and Akron Children's Hospital he has been improving. At his last doctor appt. on Thursday he weighed in at 11 pds 10 ozs. That's not a lot for a 4 1/2 month old but about twice his low weight so we're excited about his improvement.
I don't even want to think what his life would be like without so many people praying for him, pulling for him and all the assistance he gets from the Cystic Fibrosis Foundation. I've been a big believer in charities for many years now but, with all of the charities we supported over the years, I've never seen firsthand how my donations helped people. It's something that just kind of got into my routine and not too much was thought about it.
With Leland, we think about it every day. His care consumes nearly all of the time we can offer, which sadly has taken a good chunk of time I used to spend here at ABW, but we're confident his health will continue to improve. We see firsthand how friends, family, caregivers and CFF help improve his way of life. I don't see how we could have done this alone.
The Cystic Fibrosis Foundation is having a fundraiser event on May 17 called Great Strides and my wife is again walking in this one. She's been walking in this for years now but this year has a special meaning. I can't think of a more generous group of people than those right here at ABW. If you have some extra charity $$, please consider making a donation. You can see her CFF page, and make a donation, here. If money is too tight, good thoughts and prayers for Leland are great too. You can even donate and pray for him I'll update the other post about him with a cute photo.
Thanks again for everything ABW and family. This over-protective husband/father/grandfather (pawpaw) found the support very hepful in overcoming the feeling of helplessness for something I couldn't just fix.
April 13th, 2009, 04:15 PM #2
Praying for Leland's continued improvement.
April 13th, 2009, 04:51 PM #3
Done. Thanks for the update on little Leland.-Don't criticize anyone til you've walked a mile in their shoes. Then when you do criticize them, you'll be a mile away and have their shoes.
- Silence is golden. Duct Tape is silver.
April 13th, 2009, 04:54 PM #4
April 13th, 2009, 05:11 PM #5
I'm praying for you as well! When our daughter was born, the hospital pre-screened her for a number of diseases including CF. She tested positive but after a number of genetic tests, we learned she was a carrier, past on by my wife.
To have traditional CF, both parents need to pass the gene on to their child. While I don't have the CF gene, I do have a variant, which may lead to minor symptoms of CF for my daughter (Asthma, Sinusitis, etc.).
Our daughter Rebecca will be monitored periodically (Every 6 months for now), so fi she does develop minor symptoms, they will be able to treat her.
Our children are facing much better odds today, due to early testing and treatment. To put this in perspective, a friend of our family had a daughter born with CF in the early 80's and she died at 13. During the late 90's, the average age increased to 39. With the advances of today and the wonderful CF specialists, children with CF may well lead full and productive lives and an average age comparable to their non CF counterparts.
One thing I know for sure. These children are incredible inspirations to us. Their healthcare providers are dedicated and invested to find a cure and treatments for these children.
I will pray for you, that your grandson has a wonderful, healthy and productive life.
April 13th, 2009, 06:56 PM #6
I too want to thank everyone for their support and prayers, it means so much to our family Leland has a special place in all our hearts. The CF Foundation has done so many great things for so many children, we are proud to support it in every way.[b]Greg Rice Jr.[/b]
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April 13th, 2009, 07:36 PM #7Originally Posted by bibby
These children are an inspiration. Back in my paramedic days we used to make regular runs to nursing homes that had severely handicapped, mentally and physically, children. Most of the people who worked there had such compassion and patience. I had such admiration for them and wondered how they could handle that every day. We now have a small understanding where the workers' drive comes from. No matter how tired or strung out you get, you always seem to have enough strength and patience. Thank you for the prayers and thoughts!
April 13th, 2009, 07:49 PM #8Originally Posted by Greg Rice
On another note, there are other factors of CF related symptoms for males, such as infertility. It took my wife and I 3 years to receive our miracle and although the research into a male having a variant gene causing infertility, is in its infancy, we do know that males who carry a CF gene can have male factor infertility (Vas Deferens abnormality). So maybe one day, my wife and I can have some answers as to why we had some difficulties conceiving with child #1. Hopefully child #2 comes our way with a little less fight.
I'm sharing my story because men and women need to educate themselves about CF issues and possible infertility issues. On a side note, I'm an advocate in Minnesota for the infertility community and learning about CF or CF variances, can help us learn about and educate ourselves about how it effects infertility.
April 14th, 2009, 12:52 PM #9Originally Posted by bibby
Thank you all again, my wife was dancing around last night all excited to see the donations and support. The ABW family more than doubled her amount raised and all in one day! You are all so awesome!
April 20th, 2009, 12:32 PM #10
May 18th, 2009, 02:39 PM #11
Well, the walk was yesterday and the weather held out. Total raised was over $4,000, most of that from my ABW family! You are all awesome The Walk page shows less but that only shows the online donations.
Thank you all again for your generosity! Leland thanks you too
May 18th, 2009, 02:48 PM #12
May 18th, 2009, 02:56 PM #13
Leland rocking the Walk!
He is absolutely adorable.
May 18th, 2009, 03:04 PM #14
Thank you. He really looks healthy now and is over 13 1/2 pounds. Small for his age but better than the 5 pounds he was at. When he smiles, it nearly goes completely across his face. For the life of me I have not been able to catch it with the camera. Every time I try he won't do it but I'll catch him sooner or later.
By RemodelingGuy in forum Midnight Cafe'Replies: 4Last Post: November 29th, 2009, 02:00 PM
By Greg Rice in forum Virtual Family and Off-TopicReplies: 51Last Post: April 13th, 2009, 09:29 PM