Wednesday, October 19, 2011

A Few Words From...

...a great friend, bumblebee mommy, and current secretary/treasurer of the foundation shared this entry with our readers today. Sadly, we have added the joining of another little one to the list of losses in just this month alone. Such devastation brings our family close together as we embrace those families in loss with our love and dedication. It also brings myself and the foundation board of directors; Heather Gibson, Angela Mason, Holly Mansfield, and Sarah Garcia to focus on where we need to be in order to achieve our mission and vision for the foundation, and in helping families to network and thrive:



It is with great sadness that I write today about the loss of another Hydranencephaly miracle child, Noah King. To compound that loss, we suffered the passing of Chase Reid as well. I have been grieving this week. As I know many of you have as well….

Not long ago, I was grieving for another long time friend who lost her beautiful daughter, Ashleigh Nevil.
Chase was 15 years old. Ashleigh was 14 years old. Noah was 10 years old.  As I have grieved and cried over these  losses, I have also been doing a lot of thinking and soul searching. Feeling the need to put my thoughts on paper, I realized that what I really wanted to do was share my thoughts…not with the world, but with my family…my Hydran Family.

So I hope you don’t mind if I take over the Foundation blog for a day as I try to express some long overdue thoughts and emotions!

I “met” Marianne Nevil, along with several other wonderful families, 10 years ago, when I joined the Hydranencephaly support group. Within a few weeks, Lisa King joined the support group, after Noah was born with Hydranencephaly. It was a wonderful thing to have the support, companionship and love of other families going through the same struggles, the same medical issues, and the same feelings of joy and awe when our precious children overcame the doctor’s dire predictions or achieved some spectacular new skill that we were told they never would (like a sweet smile, or coo, or a good poop! LOL) . I thank the Lord every day that the Rays of Sunshine website was there and that Barb Aleman cared enough about not just Kayda, her child, but other children with this devastating condition, to create a place where we could all gather to talk, laugh and cry with one another.

Over the years things morphed and changed, as things will over time. But one thing remained steady. That was the caring and love we all had for one another’s children. No matter the disagreements, differing opinions, occasional arguments among the “adults”, the love of the children remained steady. Their best interest was always at the heart of everything!

Today, as I reflect back on the last ten years (My Chrissy will be 11 years old in two months), my heart is heavy with all the losses, but filled with joy at the same time, for all the friendships formed, the accomplishments our children have made, and the progress that has been made in Hydranencephaly awareness. Ten years ago, there were only a handful of families. We grew from that core group to over a hundred families and then, when Facebook overtook the internet, and the Hydranencephaly Family to Family Resource Group was formed, we blossomed even further to over 200 families! We found new families with newborns, old families we had lost contact with, and new families who had been living with Hydranencephaly for years with no support at all, like Chase’s family and Malcolm’s family.
Wow! That is amazing when you think about it! Yahoo Groups was wonderful in its time, but Facebook brought Hydranencephaly awareness to a grander, greater scale. We have been able to enjoy more morphing and evolving in a positive way.

As of this year, we have a Foundation formed for Hydranencephaly! Not just one, but two, each with different goals and missions, but both working towards helping our children! The love of the children is what it is all about. Our families need every bit of work and support we can get. We all need to support and love one another FOR THE CHILDREN. 

I think 99% of us are doing just that. I thank God every day for all of you and count it a privilege to know you and your precious children. Some of you I have met in person, and some I have not, but all of you are special to me. All of you are part of my family.

I know for a fact that Alicia, Heather, Holly and Sarah feel the same way. That is why we joined Alicia in her quest to form a Foundation for Hydranencephaly. The mission and goal of the Foundation is to assist families, raise money for awareness and also eventually (when 501(c)3 is established and we have grown) to raise money for YOU, the families, by providing grants and help with things you need for your children. We want to have an equipment lending program, where equipment can be donated and borrowed by members, and then returned for use by another family that has need of it. We want to provide grants for children in need of specific help, we want to make the Medical community aware of our Foundation, so that when a child is born with Hydranencephaly they are immediately referred to the Foundation…..and that is just a few of the lofty goals we have for the future. If you have not read the mission and goals of the Foundation, please go to the website and read them! See if you feel you want to support this cause.

If you do, please let us know if you want to volunteer – we will be needing more and more volunteers as we work to spread awareness and give information to local communities and doctors around the world!

The work will continue. Some changes and announcements will be made soon, as we work to add services, make the Foundation a Global effort, and make it more accessible for our families. We are also committed to having our families be more involved in the Foundation work. We don’t want you to wonder what we are doing, wonder where your donations are going, or wonder who is benefiting from the work. We want you to KNOW all those things!

As we have gotten off the ground, we have been focused on getting all the legal paperwork, website organization, and basic family information packets ready to go. While awaiting news from the IRS on our 501(c)3 status (which, when approved, will make all your donations tax deductible) we are working on these basic ideas and just beginning the quest to spread awareness. We have started small, with the awareness bracelets and window clings. We have been blessed by the generous efforts of many to help us get the Foundation off the ground – from those making jewelry and donating part of the profits from it, to those volunteering their time and effort to help with logo designs, merchandise design, and informational brochure design, all the way to those who are hosting Scentsy, Tupperware and various other product parties and donating a percentage to the Foundation, on their own, out of the goodness of their hearts!

We want you all to know how much the efforts are appreciated. We want you all to know that the Foundation was created for YOUR CHILDREN, ALL of YOUR CHILDREN!

I speak for the entire Board of Directors when I say that we want to help. We want to earn your trust. We want to be there now and into the future as a valuable resource for all families with Hydranencephaly children! Please don’t be hesitant to ask questions, to volunteer, to offer suggestions, or anything else that will help the Foundation to grow and be the best it can be! Please do not hesitate to ask us anything at all regarding the work we are doing, and do not rely on the hearsay or words of other’s, especially those not directly involved in this work – we are always  more than happy to answer questions and clarify projects, etc.   We are here for YOUR FAMILIES!

I also want to add, on a personal note, that it is my hope and prayer that we adults can put aside ANY petty differences, personal personality clashes, and ill thoughts of any other adult involved in the Hydranencephaly cause, and work together with 100% co-operation FOR THE CHILDREN. Everything we do must be for them.  I still firmly believe that the Hydranencephaly Foundation, Inc and the Brayden Alexander Global Foundation for Hydranencephaly can work side by side, accomplishing many great things, each in their own way. I do NOT believe there is or should be a conflict or “competition”. I know that most of us also feel the same way!

SO, I, personally, would encourage everyone to read the mission statement and goals of BOTH organizations. Then, follow your heart and support either one, or BOTH (that’s the best optionJ). Both organizations are for the children! 

God willing, both will succeed! There has been past conflict between the two founders, yes. But it is not conflict over the kids, merely conflict over organization and naming and other personal matters. It should not overflow to the Foundations, and I don’t believe that it has. I also believe that both Kammy Tribus and Alicia Harper have the best interest of the children at heart and have just been caught in a perfectly human conflict of emotions.

It will be settled, and I believe we can all come out of this for the better, especially in regards to the work for our children! Maybe I am naïve, but I think we can all work together for the common good of our children! My prayers are for this to happen, and I hope all of you will be praying for the same!

Look for new and exciting things to happen in the near future! And be sure to share your thoughts and feedback with the Foundation, either through this Blog, on the support group, or email us individually!! 

Much love to you all! And I dedicate this entry to all our precious little ones who have joined the angels, both recently and over the years! It is for them that we should love, encourage, and support one another! 

Love, Angela Mason

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