Fundraising and Ollie's Needs - So what's next?

So Bekka and I have been floored by the outpouring of support for our special little guy but anticipation and planning never stops for us.

We've been thinking about what we can do to raise additional funds for Ollie and have heard ideas for walks and golf tournaments and car washes and the like. Neither of us has ever organized anything like that but we are willing to learn and do for the little tyke. If anyone out there has thoughts, please let us know!

When Bekka gets back from the SMA conference, we are going to take a long look at what we need and when we need it. In many ways, we never anticipated Oliver would be with us this long. Now he's almost a toddler and we have to continue making plans and anticipating his needs.

We have had questions about what sort of expenses and needs Oliver is incurring or we are expecting. The following is a short list and is in no way complete.

• Better mobility for Ollie. We will be trying to figure out a wheelchair or stroller that allows him to lie almost flat while also allowing us to more easily transport equipment. It's quite a sight seeing us trek to and from a doctor visit!
  
• Appropriate toys and games for Ollie. It's hard enough entertaining a regular 10 month old, but entertaining an SMA child is even tougher. We will be looking to get creative to provide Ollie with the stimulation and entertainment he needs beyond television and videos.
  
• Medical expenses including copays, coinsurance, and out of pocket expenses for Ollie's multitude of medical equipment. It appears we have been approved for CAP-C (we are awaiting the official letter). This will help relieve the burden, but not completely.
• Insurance. We don't know the final resolution of Bekka's job situation yet, but it is likely we'll be paying out of pocket costs for her insurance and Oliver's insurance for the foreseeable future.
• In the nice to have but not yet critical category: A larger vehicle. Bekka and I both love small cars (We have an Integra and a Mazda 3) but as Ollie grows and his equipment needs grow, we'll be looking at acquiring something larger to make it easier to transport us all. We have wonderful friends that loan us vehicles on a moments notice -but you hate to abuse that!

This is why we are so thankful to everyone. Imagining all the additional stress we'd be under right now without the meals and visits and fund raising is staggering.

Fundraising Update

Wow.

I'm pretty much speechless.

The yard sale and bake sale at Durant Road Preschool raised over $1,000! Thank you so very much to each and every person involved in the fundraiser. Oliver attended Durant Road Preschool until his diagnosis made it unwise to continue at day care. Many teachers, assistants, parents and other folks that we don't even know helped to make this a very successful event.

We can not begin to tell you how much this means to us, how much we appreciate this and how thankful we are for the support from our community.

And this is not the only fundraising event for our dear little Oliver.


Wednesday, May 20, 2009 - 7pm
Entrees4U at Poyner Place Shopping Center - Raleigh, NC
lizajane baby Trunk Show

Saturday, June 6, 2009 - 2pm until 6pm
Stewart Simmons Volunteer Fire Dept - Deep Gap, NC
191 Jakes Mountain Road
Spaghetti Dinner & Raffle


Thank you so very, very much!

Upcoming Fundraising Events

We are so fortunate. So many people have reached out to Ollie and have helped raise funds for his care. We can not begin to thank everyone for this. We are touched and humbled.

Some of the upcoming fundraising events include:

Saturday, May 16, 2009 - 8am - noon
Durant Road Preschool
Yard Sale and Bake Sale

Wednesday, May 20, 2009 - 7pm
Entrees4U at Poyner Place Shopping Center
lizajane baby Trunk Show


There's even a Spaghetti Dinner planned near where Ollie's Nana and Pawpaw live! We'll update you as soon as we have more information.

Again, THANK YOU from all three of us but especially Ollie!

How You Can Help Ollie

Many people have asked us how they can help. With the encouragement of family and friends, we have opened an account at the State Employees' Credit Union for Oliver's benefit. Below is the information that our wonderful friends and neighbors have compiled to aid us in this endeavor. Thank you all so very much!

Imagine if soon after your first child was born you were told he or she had an incurable genetic disease which would undoubtedly take his or her life before their 2nd birthday. My friends, Neil and Rebekka Mastin who reside here in Raleigh, are faced with this tragic reality. Their son, Oliver was diagnosed at two months with Spinal Muscular Atrophy (SMA), Type I, the most aggressive form of this genetic disease. Translation: “Ollie”, as his friends and family have come to know him, at the age of eight months has been given no more than a year to live. The slow progression of muscle degeneration that began in his legs when he was two months is quickly overtaking him, and he will eventually suffer respiratory failure.

I would like you to consider giving to a fund that has been established to help pay for the monthly use of critical and expensive medical equipment that will make Ollie comfortable in his final months. Ollie’s parents are working people just like you and me. His Mom’s insurance coverage for him has been salvaged as she continues to work part-time. However, the insurance has certain restrictions that disallow coverage for certain medical expenses.

A small group of Neil and Rebekka’s friends and neighbors have created this communication so that Ollie’s short life can be celebrated rather than endured. Time is expiring and the needs are acute. Please consider giving something today. Whatever amount you can give will be appreciated. What matters most is that we send a clear message of love and hope to Ollie. As he struggles to take his final tiny breaths of life, we want his parents to feel relieved of any unnecessary financial burdens and be able to comfort him in so much as is possible.

Thank you so much in advance for your gift. You may send checks for deposit through the mail or deposit checks or cash in person at any State Employees' Credit Union.

State Employees' Credit Union
6320 Capital Blvd., Ste 101 Raleigh, NC 27616
Phone: (919) 871-0450 Fax: (919) 790-0305

Please make checks payable to Oliver Mastin.

The Credit Union will ensure that the check is deposited into the proper account.

To learn more about SMA visit:
http://www.curesma.org

To help in other ways, contact Robin Banker at
robinbanker@gmail.com

And continue to follow Ollie’s story at
http://olliestale.blogspot.com/


“Hearing a diagnosis of something like SMA is beyond devastating. Life becomes compressed and literally day to day. Every little milestone is magnified a thousand times and every little cough a million. Lucky for us, Oliver has a million candle-power smile that turns on at the drop of a hat that can light up anyone's bad day. Maybe it's because his time on earth will be short, but he seems to burn all the brighter for it.”
Neil Mastin

Neil and I intend to use these funds to help cover Oliver's medical expenses including such things as doctor's visits, durable medical equipment, and medical supplies. Any additional funds will be donated to Families of Spinal Muscular Atrophy, the Muscular Dystrophy Association, or Duke Children's Hospital and Health Center.

Thank you again!