This is a letter from dh's internet friend & model car buddy. It seems they need help and for a good cause. I wasn't sure where to offer it to MDC members, so I'll start here and maybe cross-post somewhere else. (got an ideal place, let me know) They're just getting started, there is no website, but it is official as you'll read below.
Here is his email if you want to get involved: barten-bvc @ sbcglobal dot net
His name is Dan. Dd name is Lydia age 5. Please feel free to email him to learn more. My dh feels that he (Dan) is a genuinely nice guy and forwarded his plight to me in hopes I would know where to find help. DUH! MDC!
Thank you to all who read!
An update from Wauconda. Lydia has been doing great after her pacemaker operation. It has been another year of new procedures and systems. But we are getting the hang in this area of life. She is growing, learning and speaking more rapidly than before. We still have her in weekly therapy and more frequent heart check-ups. Most appointments are being conducted over the phone. (we hook her and a phone to this machine) This saves a ton of time and travel.
Lydia had her one year (well almost one year) check up in the doctors office this week, he said the leads into her heart are secure and doing good. (this is a big relief, because we were to avoid anything that would have her hanging or putting tension on her arms that might have pulled the leads out of position.) So that is good news.
She understands most everything you say to her. . .and she is communicating back verbally. . .. and it is a great thing. She likes to talk on the phone. It is starting at five years old. . . .time for a second line! ! !
We are hearing rumors of Lydia's educational program being discontinued from her local school. She is to go through a strenuous series of testing to "place" her into the proper program. Well, she might stay in a regular class with an aide, or she might have to be bussed several towns over for classes and therapy. This will be determined in her annual IEP meeting. . . .we have alot to learn in this area. Lydia has rights, but we don't know them all . . and the schools are trying to save their budget. . .so if we don't have an informed advocate Lydia could be missing out some crucial early education and therapy rights that could progress her greatly in the future. As we all go through the continual life education process!
We want to thank everyone for their prayers and support to get Lydia (and the three of us) through this last adventure in life. It has changed the way we look at life and we are grateful for the little things in life. We understand each day of life is a gift from GOD! And we need to enjoy each moment we have with each other, and especially with our children.
Our series of events we have experienced with Lydia. . . the hardships, joys and triumphs. . . Laura and I wanted to help other families, who unexpectantly find themselves in similar situations. This would be monumental in keeping families together and moving forward. . .(the smallest act of kindness was a total encouragement to us) IF we could relieve some burdens for others, they could focus on their child's immediate needs.
We have been doing fundraising for Christian Missionaries (James and Lydia are a big help with this, too) for the last three years with a Used Toy / Toy Drive. . .. collecting pieces and broken parts as well as clean and new toys. . . .we have raised over $11,000.00 with these toys. Well we are going to use this event as one of many avenues that will be a help to special needs families with their trek through the stages of intervention and progression for their special children. We want to help others . . . as you have helped us.
We have formed a NonProfit Organization called "Living Legacy". We have been working on this for almost a year! (with numerous professionals and others experienced in the process) We have a board of directors (7 people) and we have been meeting quarterly and working through the paper work, by laws, business plans and applications. Well just yesterday we were approved by the Federal Government to be an official tax exempt organization. (We will be able to give a tax write-off for all donations).
We are going to start fund raising through numerous efforts to create a fund that will help families with special needs children who are overwhelmed with their medical or special needs situation. As well as providing therapeutic toys and crafts to the child as well as the siblings (who often get lost in the medical shuffle). Living Legacy is officially a Nonprofit 501(c)(3) organization. A smaller portion will still continue to help others through Christian Missionary work. These efforts will cover feeding street children, building homes, schools, orphanages, and churches in rural areas.
It is time to give back, so others can strive for their dreams of a normal life.
Laura and I will continue with our occupations and jobs. With the help from the directors and any volunteers, this could be a great blessing to many people in need.
Please pray for this organization to be abel to touch and bless the lives of many others (as you have blessed us). We will be looking for donated space for us to store items and maybe a sight for a toy sale? Auction? Events? Also, a place for our board members to meet. We are looking for a place in (or very close) to Wauconda. It could be a tax write-off! If you know anyone with space please let us know. We would need about 1500 sqft (or more) to start. Our last toy sale filled a 40 foot by 100 foot tent.. . .with spill over of the larger items.
Once all the printed materials are created we will be creating a web site that will give more details for "Living Legacy".
If you would like to be posted on future developments, and collection locations, and event information. Please send me an e-mail and we will include you.
Thank you again for all your support.
Dan, Laura, James and Lydia