It’s been a while since our last update but with our new fund raising efforts and your continued support we are very happy to inform you that we will be assisting Eli and Sean Wilson with their occupational therapy and horse therapy this year. The new insurance company covers only a portion of the therapy visits and the Lets-Do-This foundation in conjunction with TherapyWorks Northwest in Oregon will be covering the remaining costs. Once TherapyWorks Northwest found out that we were going to help Gillian, Avery and the boys they agreed to give us a very generous discount on the services. This is huge for the Wilson family as the therapy really helps the boys, not to mention it freeing up funds for the family to pay the bills!
It hasn’t been fun and games for the Wilson’s. Without going into too much personal detail here I can share with you what Gillian has updated me with. Gillian says that it’s been a very rough ride the last 6 months or so. Many scary visits to the emergency room, Eli was admitted to the hospital over Christmas and New Years and had high fevers at home each night, all over a mild flu virus.
Eli is 8 ½ now and is beginning to understand the severity of having Leukemia and has some anxiety about that which as you can imagine has led to some behavioral adjustments but the family is working through these along with everything else. Gillian says that chemo has taken a toll on Eli. Eli did physical therapy last year and he is in occupational therapy every other week now. He falls down a lot, and is somewhat clumsy. He has neuropathy in his lower legs so walks oddly. They say he should catch up after the chemo ends. She had him tested neurologically last summer during his anxiety run and his IQ was normal…just his motor skills were very low. He was 5 when diagnosed, and it is like it froze him in time. He still cannot swing on a swing set, or skip, jump rope, zip a jacket, or fasten buttons, brush teeth, etc…..but he loves his time in occupational therapy and because she home school the boys, he is unaware of his differences when compared to others his age.
Here’s a little more detailed information about their occupational therapy and insurance coverage that Gillian provided.
Insurance only covers 35 visits a year for occupational therapy for the boys and the new insurance does not cover the hippotherapy for them (horse therapy)…that was especially great for Sean with his autism. It brought his anger and frustration level down. Any help with that would be very appreciated. We are only taking the boys every other week right now as we are not able to manage the weekly visits and this is an area where help would be awesome. Maybe the organization can sponsor them so they can go back to weekly visits, and help when the insurance runs out. The provider sponsored Sean last year for the horse therapy portion, but not this year. Assistance would be incredible, and would benefit them both. Occupational therapy has been the single most beneficial treatment either of the boys has received. Therapy Works NW is the provider in Gresham, OR. They are a non-profit and really care about the boys. I am on cloud nine with our ever approaching end of treatment day. 9 more visits….3 more spinal taps. Last pill will be taken on September 27th at 6pm PST and I will send a photo!!! It seems like a dream.”
The Lets-Do-This Foundation is still in desperate need of, and thanks you for your continued support! Since our last update, the Lets Do This board has been busy attending meetings and finding new ways to add additional funds to support our efforts and keep the foundation rolling. In late November we entered into an agreement with Oasis Refreshments for the vending machines at Cues. Oasis supplied the company with new vending machines and an array of fresh sandwiches and selections as well as chips and drinks. The machines even have convenient credit card readers for payment. In return for the contract, Oasis has agreed to contribute a percentage of the profits to the Lets-Do-This Foundation. Again, we thank you for your continued support and ask that if you know anyone here at Cues or any other company that would be open to contributing a small amount per pay check to let us know. We now have the ability to enroll people in the payroll deduction program at other companies too. Of course donations are always accepted on our website www.Lets-Do-This.Org by clicking the big red button. I look forward to sending out the next update with more great news and information.
Patrick E. Mahoney
PO Box 195205
Winter Springs, Florida 32719
I must apologize for this update being so long but there is a lot of valuable information to share with you and I implore you to please read it, feel good, smile and help. Thank you.
2011 Holiday Boutique
The 2011 Holiday Boutique was a fantastic success! Being our first one, our expectations were set at just having a few items for sale, talking to people about Lets Do This and hopefully making a little money at the same time. We were amazed at the amount of items our supporters donated for the boutique and had to set up more tables to accommodate everything. Since our resources were limited and this was our first adventure hosting an event like this, our target market for the sale was primarily the employees at Cues since most of the board members are employed there. Not only were we very happy with the participation from the Cues employees in purchasing items at the sale, we were very surprised to have a few of our friends and past contributors show up and make purchases. We had donations from all over the nation shipped to us as well as Cues employees bringing in items for the sale. We would like to thank everyone for their overwhelming generosity in their contributions and purchases. It is clear that next year’s Holiday Boutique will have to be at a larger venue like a local craft fair.
How We’ve Helped
To update you on our assistance and where your donations are going, we have been able to provide the LaVerde family with the nutritional formula necessary to carry them through to the end of the year for Gabrielle. We also sent Eli and Gillian Wilson $500.00 worth of fuel cards to help them with the expense of traveling to the hospital so many times a week. We have also been in contact with another family in our community who has a 1 year old daughter with a very rare, disabling condition with little or no treatment at this time. We’ll tell you more about that as our communication continues and we have a better understanding of the child’s condition and the families need for our help.
501(c)(3) Tax Exempt Status
On the business side of the update, we are extremely excited to announce that the Lets Do This Foundation is now a federally tax exempt organization under section 501(c)(3). What this does for our organization is allows all of the wonderful people and companies that have made a donation since April 28th 2011 to deduct it on their tax returns!!! This also opens the administrative doors for our Foundation to begin communicating with larger non-profit organizations, colleges and associations that support projects like ours. We have already registered Lets Do This with the Rollins College Philanthropy and Non-Profit Organization to expand our network of contacts and resources to help us to continue to grow and learn to become more successful in our mission to help.
Reach Beyond Project
As we prepare to take the foundation to the next level of support, it is our plan to launch our “Reach Beyond” project in March 2012. This project will link the Lets Do This Foundation up with other local established non-profit organizations that are already providing assistance to the community on a larger scale. It is our vision to offer our unique assistance to the families already within their focus who are also suffering financial distress due to having children with major medical conditions. This will be our way of augmenting the larger organizations services by helping more people in the community and reach beyond the borders of our limited community at Cues. We will need major financial supporters to help us with the Reach Beyond project as this will require more funding than our current budget can support. It is our hopes to be able to raise $100,000.00 by way of corporate sponsorships, yearly pledges and financial support from our community. If you are in a position to assist us with the Reach Beyond program I ask that you contact our office right away. Even if you think you may be able to introduce us to someone or a company that may want to be a part of this project, I ask that you let us know. One never really knows until they ask and we are prepared to ask anyone and everyone to make this vision a reality.
Las Vegas Night Event
We are in the process of planning our first annual Las Vegas Night!! Reservations have already been secured for the 6th of June 2012 at the Elks Club on Paramore in downtown Orlando Florida. We’re looking for a few sponsorships at the $1,000.00 level to help us with hosting the event. As in previous events, we plan to provide the sponsors with their logo and links on our website, huge banners broadcasting their support during the event and specific mention in my address to the people during the event.
I would like to thank each and every one of you for your time, contributions, volunteering, ideas, suggestions and interest in helping the Lets Do This Foundation. It’s not uncommon to hear any one of the board members say “We’re in this for the long haul” and it is very encouraging and motivating to see so many people stand with us on this adventure. Your continued financial support is also very appreciated and I ask that if it’s been a while since you used the big red “Donate” button on our website that you visit the newly remodeled site, use the donate button and then browse the galleries of pictures we have posted from our past events. We’ve also included a “Past Updates” section just in case this one wasn’t long enough, or you wanted to read our previous update messages.
Thanks again. Without your help, there would be no Lets Do This.
The 2011 Holiday Boutique Was a SUCCESS! We would like to thank all of the wonderful people who donated items for the 2011 Holiday Boutique. The event was a big success and exceeded our expectations. It’s obvious that we’ll have to look into leasing a table at a local craft fair for the 2012 Holiday Boutique.
Another Update and Reminder - Holiday Boutique is December 1st
We would like to remind everyone that our Holiday Boutique will be December 1st in the Training Room at Cues. If you haven’t sent in your items for the boutique yet, we ask that you do soon so we can inventory and set expected pricing for everything. If you have a suggested price or any specific details about the items you donate please include these also. Items can be sent to our PO Box, Cues or if you’re in the Orlando area, feel free to contact us and we’ll be happy to pick them up.
Because of your continued support we are now preparing to order 6 more cases of nutritional formula for Gabrielle and another batch of consumable supplies for her suction machine. In the past few weeks we have also been able to provide the LaVerde’s with another batch of oral syringes, feeding tubes, 3 cases of Pampers Cruisers and 2 cases of Pampers wipes and a “Cargo carrier” that attaches to the trailer hitch on their car to make transporting Gabi and her wheelchair much easier.
Eli is now preparing to enter his next stage of very intense treatments. For more information and details we encourage everyone to read the journal that Gillian is updating on a regular basis at http://www.caringbridge.org/visit/eliaswilson . Again, with your help and continued donations we are preparing to send the Wilson family several gas cards to help offset the expense of their long journeys to the hospital for Eli’s tests and treatments. Gillian says they’re doing “Okay” for now but we can see that December and the following months will be a huge challenge for them as a family, as well as financially.
Our prayers and thoughts are with these families as the holidays near. While most of us are worried about what size turkey to buy or where we will gather to celebrate our individual holidays, they continue to be faced with the day to day challenges, worries, monitoring and intense caring they have become accustomed to.
It feels great to be able to tell you that together we are helping to ease their burden, if only a little. Thank you for saying “Lets Do This” with us and making a difference in these families lives.
The Lets Do This Foundation continues to keep in touch with and assist LaVerde and Wilson families where needed. Since our last update we have been able to provide another case of nutritional formula for Gabi that the insurance wouldn’t cover.
For quite a while now bathing Gabi has been a difficult task for the LaVerde’s. Getting her into the tub and supporting her head, supporting her body while trying to wash and rinse her, letting the water out while trying to dry her and finally lifting her out of the tub can be quite uncomfortable, challenging and dangerous at times. We discussed the different options with Joe LaVerde and he came up with a bath chair/lift solution that would make giving Gabi a bath much easier and safer. With your help we have been able to purchase the bath chair/lift for Gabi. Joe LaVerde was kind enough to share his appreciation with us in an email and also recorded a video for us. Here is what Joe had to say about the chair: (We also attached his video)
This is really a neat concept. It is air operated by a rechargeable compressor (included) and after you understand how it works it is a breeze to assemble/disassemble from the tub. As you can see in the video, it supports her very well at the top of the tub. It also allows her to sit in the tub deeper than her fixed height chair (this she seems to like).
The greatest advantage of this chair is the fact that she can be safely placed in and taken out of the tub without worry of slipping out of my hands and absolutely minimizing the possibility of hurting my back in the process. I have to tell you it was one of the most challenging tasks I had to deal with especially as she continues to grow.
I would like to thank everyone involved with this purchase and your help in making life a step easier in the care of Gabrielle. - Joe
We’ll keep you updated on our continued efforts as we assist the LaVerde’s
Gillian Wilson reports that Eli is doing very well with his blood counts and chemo treatments and now that heating season has set in on Oregon she appreciates the air purifiers even more. Gillian says her day starts with the often tortuous lighting of the woodstove to heat the house. The chimney is 2 stories tall, and filled with cold air…inevitably; the house fills with smoke as the fire gets hot enough to push out the cold air and the smoke finally goes up. She used to run around waving pillows to get the smoke alarms to stop. This has not happened since getting the rabbit airs. Gillian says they sense the smoke, automatically kick into turbo…and clear the room before the smoke alarms have a chance to complain. To quote Gillian, “How cool is that?”
January will begin a new health plan year for the Wilson family which means deductibles will once again need to be met and it may present another opportunity for the Lets Do This Foundation to assist as Eli goes through his blood work, tests and chemo treatments. We’ll keep you updated on that front as it progresses.
We’ve also been in contact with family and friends of a few other people in our community who are either on the verge of or already having a difficult financial time due to major medical needs in their lives and continue to stand at the ready to assist when they are ready.
We still need your contributions for our Holiday Boutique which will be held on December 1st at Cues in Orlando Florida. It’s going to be a huge festive day and we’ll have tables in the large conference room to display all of the items available at the boutique. Please send any arts, crafts, holiday items or baskets to The Lets Do This Foundation - PO Box 195205 - Winter Springs, Florida 32719. If you are in the Orlando/Central Florida area and are worried about shipping a fragile item, contact us at 407-648-2085 and we’ll be happy to arrange to have the item picked up.
That’s about all we have for this update. We would like to thank you all again for supporting the Lets Do This Foundation and please feel free to contact us if you have any questions or suggestions or have any information on someone that may need our help. TOGETHER, WE ARE DOING THIS!
Something most of us take for granted and don’t think too much about is taking a bath or a shower. Bathing Gabrielle LaVerde has been very difficult and cumbersome for her family for some time. Because of your continued support, in addition to providing some of the day to day consumables necessary for the care of Gabi, the Lets Do This Foundation has been able to provide Gabrielle with a specialized bath chair/lift device to make bathing her easier, safer and more comfortable for all. We are also continuing to work with Joe to come up with a safer, more comfortable and affordable solution for transporting Gabi.
Also due to your help, the Lets Do This Foundation has been able to provide Eli Wilson with two Hepa filters for his home to help reduce his exposure to infectious germs. Eli had been waiting to begin his chemo treatments but several infections have delayed the process. It is our hopes that with these filters Eli will be able to stay infection free and resume the treatments he needs to help him win his battle against Leukemia. As you can see, Eli’s mother Gillian was very excited to receive the air purifying systems. Here is an excerpt from her email to the foundation;
“Thank you again everyone! Our Hepa filters came just now……Eli loved the monkey faces! Very fun. He is calling it “monkey breath”. You even got wall mounts! Now I have purified air in quadrant b and sector 7….I moved the monkey units into Eli’s 2 main rooms. I am still absolutely shocked by everyone’s kindness.
Bonus points from the boys for them each getting their own cardboard box to play in….no fighting!”
It is difficult to express how grateful we are to be able to share this news with you and thank you all again for your continued support. Yes, together we are doing this!!!
We are very happy to announce that the first annual Iron Butterflies Family Picnic was a huge success. We had over 240 people attend the picnic and 30 amazing volunteers to help run things smoothly. In fact, I doubt that too many of the guests noticed the little hiccups we had. It was a hot one out there but the rain stayed away and we have no doubt that the children slept well that night! Just before lunch was ready Joe LaVerde took the microphone to share a history of his families experiences and to thank everyone. Gabrielle and her mother Danielle made a cameo appearance as well.
Pictures are now up on the www.Lets-Do-This.Org website in the “Events” section. These are low resolution images for web viewing. If you see any you like, please contact the Lets Do This Official Photographer, Richard Ballard via his website www.VizionPhoto.biz for high resolution images or prints.
Those of you that were not able to attend the picnic might ask “So, how did you do?”. This picnic exceeded our goals for getting the word out about Niemann Pick Type C, the Lets Do This Foundation and our mission as well as financially. Thank you ALL for being part this first event and our dream. Without your support and contributions this could never have happened.
Now! On to the next event(s) – Sweet Tomatoes in Altamonte Springs on SR436 is sponsoring our “Take Your Family Out To Dinner” night on October 5th 2011 from 5:00 to 8:00 pm. They will donate 20% of all proceeds generated by customers with our flyer to the Foundation. Please join us for an evening of healthy food and great company. Tell your friends and brings your family. The flyer can be downloaded from our website.
We plan to have a “Holiday Boutique” in early December and are looking for any arts, crafts or anything related to the holidays that you are willing to donate. We don’t have an exact date for this event yet but will of course keep you updated.
In closing I would again ask you all to keep Gabi, Eli, Jim and all of our friends and families dealing with their different medical situations in your thoughts and prayers. Thank you again for helping the Lets Do This Foundation make a difference. Together we ARE doing this.
As promised, here is the latest update as of 8/26/2011.
We’re making great progress on our “Payroll Deduction Donation” program. We are at 16% employee participation now, which surpasses our goal of 15% by the time of the picnic. We’re setting our goal for 22% employee enrollment by the end of the year.
Our “Corporate Sponsorship” campaign is really taking off and we’re making new friends. We are overwhelmed with the amount of support we are receiving from the friends and business acquaintances at Cues and have received so many emails with words of encouragement and support!!
The picnic plans are also coming along very well. We have selected all beef hot dogs (Not the filler type you get at the flea market) and beef hamburger patties. We’re also going to have cole slaw, chips, potato salad and baked beans for everyone. A few of our friends have already offered to donate the plates, napkins, utensils and buns which is a great help!! Our “Children’s Games Committee” is planning to have a three legged race, a sack race, a dance contest and piñatas for the children. We’re also planning on having at least two “Corn Hole” games set up, a volleyball net and sand pit and a scavenger hunt for the adults and bigger kids. The band “3DB” has signed on to perform at the picnic and will be providing their concert free of charge to help support the organization. We hope everyone enjoys their show and please be sure to thank them for helping. We are also going to have a professional photographer there to capture the event digitally and he will have a booth set up for family portraits.
Several vendors and friends have stepped forward and provided us with some really great items for our “Chinese Auction”. We have begun selling raffle tickets in advance. We also plan to run a 50/50 raffle at the picnic and the scavenger hunt will be $5.00 per sheet. The prize for the scavenger hunt is a $50 gift certificate to Outback Steakhouse!
As we keep our eye on Gabrielle, Elias and a few other family members here at Cues, we ask that you keep them in your thoughts and prayers as well.
That’s about it for this update. I look forward to seeing those of you who can make it to the picnic on September 24th. I would like to thank everyone very much for their participation and support for Lets Do This. Together, we’re doing this!!!
The Lets-Do-This Foundation is excited to announce our "Iron Butterflies Family Picnic"! A fund raising event for Gabrielle LaVerde. We're planning to have games for the children, a bounce house, a live band, food, refreshments, raffles, a 50/50 drawing and more. This picnic is open to the public and we invite you to bring your family out for a great day in the park. See the attached flyer or our website at www.Lets-Do-This.Org/Gabi.html for more information.
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