Friday, April 3, 2009

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!

4 comments:

  1. Hello

    My name is MJ Purk. My real name is Margaret. I am 21 years old and am a junior in college. I have SMA type 1+, meaning I don't fit in any category. I got your blog address from a Google Alert for SMA. I'm sorry to hear about Ollie being diagnosed with SMA. He is so cute!
    I have an organization that sends blankets to kids with SMA and would love to send one to Ollie. My organization is called B4SMA. My caregiver and several others make the blankets. If you would like more information, check out http://www.our-sma-angels.com/b4sma/
    Should you decide that you would like to receive a blanket, please e-mail me at b4sma_kids@yahoo.com with your post address. All we ask in return is a picture of Ollie with his blanket covering him.
    Also, if I can help answer any questions you may have regarding SMA, please don't hesitate to email me at any time. I am not afraid to answer any questions you might have. Big hugs to you and your family.

    MJ
    b4sma_kids@yahoo.com
    www.our-sma-angels.com/b4sma
    www.caringbridge.org/visit/mjpurk

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  2. Hi,
    My name is Jennifer Goodson and I live right outside of Charlotte in Matthews. My son Jacob has SMA I and is about to turn 3. Jacob is NOT a super strong type I, rather a middle of the road. I would love to help you and your family if you are up for it. There is also a family real near you in Louisburg (sp?) who has a daughter with type I who is about to turn 2. There is a whole SMA community out there thatwill help you feel not so alone with the horrible disease. Please let me know.

    Jennifer

    www.our-sma-angels.com/fortheloveofjake
    www.carepages.com/fortheloveofjake
    jgood03@windstream.net

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  3. Malissa VanDerVeerApril 9, 2009 at 9:05 AM

    My neice's mother, Joni, passed this email along and I want to let you know that Ollie will remain in our hearts and prayers. As I was told during my grieving period, "Some people are only meant to bless our lives for only a short while here on earth, but they will live enternally within our hearts." For the days, weeks and months that you are blessed to have your son, enjoy them and love him like there is no tommorrow.

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  4. Hi Bekka & Neil,

    I am a friend of Robin Banker and she passed your blog and story on to me.

    Not only has Ollie's story touched me because it is heart wrenching (I have twin girls just a little older than Ollie), but because of the strength and courage that you have both shown in your blog posts and in what Robin has shared with me.

    I wanted to leave a note and let you know that all of you are in our family's thoughts. You are an inspiration because of your grace and strength in the face of a devastating diagnosis.

    You are an inspiration and reminder to all of us to be thoughtful and appreciative of our time with each other and especially our little ones.

    Hugs to you and your family!

    Jennie
    Seattle, WA

    ReplyDelete