Many of you know that along with many other significant issues, Connor battled a disease called HLH (Hemophagocytic Lymphohistiocytosis). Yesterday, September 28th, many hiked the Half-Dome in Yosemite to raise money to battle HLH and other Histiocytic Diseases. Because we could not travel to CA this year and particpate in this hike, we hiked on September 18, 2008, Connor's first Anniversary in heaven, in Watkins Glen State Park. Altogether, hikers raised over $150,000 for Histiocytosis research. Thanks so much to those who donated in loving memory of Connor.
Please see the video below of White Bear's participation in our Hike for a Cure for Histiocytosis:
To learn more about HLH, please visit the HAA.
Monday, September 29, 2008
Tuesday, September 23, 2008
Our First Blood Drive!!!
Blood Drive Success!!!
29 pints were collected on-site at our Drive... 6 were collected off-site... so 35 total for the drive. We all had such a great time helping others in our community! Everyone enjoyed the baked goods too! Very cool! Thanks so much to all donors for helping to save over 100 lives! Please check out the pictures!!
Our next drive will be held Sunday, January 18th, 12-5.
758 Rt. 10 Randolph, NJ.
Please mark your calendars now!!!
758 Rt. 10 Randolph, NJ.
Please mark your calendars now!!!
Saturday, September 13, 2008
Welcome to Connor's Blog!
Thank you for thinking of us and our families during this difficult week. In some ways it is so hard to believe that is has been a year since we were with our son. In other ways it already feels like it has been 50 years. We can't really even describe the feelings we have. It's tremendous. Both the loss and sorrow we feel...the memories are so real and so raw. At the same time, we feel such joy and happiness for Connor. We're so thrilled for him, for how amazing he must feel, for how wonderful it must be for him being in heaven with God. The feelings are definitely magnified right now, just as we thought they'd probably be. Please continue to lift us up in prayer as we journey through these days.
The video below was made with many smiles and many tears, as we thank God for what HE has done in and through our little boy's life. What a precious little guy, and how very, very blessed we are to be his parents.
We are so excited about this new blog and the opportunities it brings with the coming year! Connor's Blood Drive is coming up in just a few days and we know it will save lives in our community! How awesome is that? Connor would be so very excited! Some other really amazing news to bring to you today!
Introducing...CONNOR’S HOUSE
We are thrilled to share with you that we are currently working with a small team of people on the initial planning stages for ‘Connor’s House’. Many of you will wonder what kind of house this is exactly? We feel it is just the kind of place that would make Connor proud, helping children and families and meeting a huge need… Read on!
The long term goal of the Connor’s House team is to develop a Pediatric Respite and End of Life Care Facility that will provide support to children with life-limiting illnesses and their entire families as they journey throughout the stages of the child’s illness, through their death, and then as the family faces the grieving process. This is our long-term goal.
In order to help support families currently struggling with life-limiting conditions, we are actively doing the following:
- Educating ourselves and others about Palliative Care, Respite, and End of Life Care for children with life-limiting conditions; through research, ongoing communication with professionals in these fields and hopefully through attending the Children’s Hospice International – Pediatric Palliative Care Conference this Fall in
- Providing support for many families currently journeying through the challenges of providing day to day care for their children with life-limiting illnesses.
- Working to help the medical profession better understand the needs of children and families dealing with life-limiting illnesses, through speaking engagements at local hospitals and conferences.
- Forming a planning team and advisory board.
- Defining our Services and Model of Care.
- Ongoing communication with the only free-standing children’s respite and end of life facility in the US and making contact with similar homes in Canada and the UK.
- Holding meetings with a Fundraising Consultant/Event Planner.
We need YOUR HELP to make this happen!
“I am only one, but still I am one. I cannot do everything, But still I can do something;
And because I cannot do everything I will not refuse to do the something that I can do.”
- Edward Hale
To begin to fulfill this dream, we have set up “Connor’s Fund”, where anyone can donate funds to support the efforts of Connor’s House! We’d love to start off this next year remembering our son in such an amazing way. If you’d like to give in Connor’s memory towards Connor’s House, please follow the directions below to make your tax-deductible donation:
Make your check payable to “
Send your check to:
Connor’s Fund
c/o
758 Rt. 10
Randolph
Attn: Scott Millard
Friday, September 12, 2008
Blood Donation Awareness...
ME?? Give Blood???
60% of the US population is eligible
to donate blood, yet only 5%
donate on a yearly basis.
In NJ,that percentage drops to 3%.
Do you wonder why? I think we do care. Don't you? I mean, when the need for blood is brought to our attention, and someone makes it easy for us to donate by providing a blood drive at a convenient time and place, some of us do indeed donate. So obviously, some of us do care. But we don’t really go out of our way to make donating blood a priority on a regular basis.I don’t think this happens until the need for blood really touches our lives personally. When someone very close to us requires blood products to save their life, blood donation suddenly becomes a huge priority. We become regular blood donors and also begin to encourage others to make it a priority.
It is estimated that 75% of the population
will need blood at some point in their lifetime.
Is this shocking to you? It was to me. It's the 75% that surprised me. That is 3 out of every 4 people. Wow. If you have not already needed blood, you probably will. Why not become a regular donor now before you, or someone you really love desperately needs it?
Four and a half million Americans
would die each year without
life saving blood transfusions.
This is something most of us can do for someone else, and it doesn't take a lot of effort, or education or skill. It's a tangible way we can help someone else in real, serious, physical need. Wouldn't it be so cool to be able to save a life? Who doesn't want to be a hero?
Anyone who is in good health,
is at least 17 years old, and weighs
at least 120 pounds may donate
blood every 56 days.
We can change things...
Give of yourself and SAVE A LIFE!
Give of yourself and SAVE A LIFE!
To donate blood in Northern NJ call 1-800-BLOODNJ
or go online at:http://www.bloodnj.org/
or go online at:http://www.bloodnj.org/
Outside of NJ call 1-800-GIVELIFE or go online at:https://www.givelife.org/
All about HLH
Histio..WHAT?
Hemophagocytic Lymphohistiocytosis. Are you kidding??
When we first heard the term we wondered...could this possibly really be the name of a real disease? The Doctors just call it HLH. When they actually call it by its’ full name (and most Doctors have never even heard of it, no kidding), everyone looks a bit dazed as they always catch the “histio” but inevitably miss the part before and after…
Hemophagocytic LymphoHISTIOcytosis
It would be easy to do, wouldn’t it? To catch just the HISTIO part? Histio is easy to remember, the rest is just really unbelievable. It would be nice if you could do this with the actual disease too. Cut out the parts that are hard to deal with and just keep the parts that are easier. It would be great, really. Unfortunately the disease is actually very much like it sounds. It truly is horrendous.
In typical “Connor fashion” he managed to get this disease. A disease that strikes…drumroll please…
1.2 in every 1 million children under the age of 15
Yes, he got this on top of his other boatload of conditions, issues, and accessories. He must have figured he needed to be even more interesting to the medical profession, and get even more types of specialists involved in his care. This he accomplished!
Connor was struck with HLH at the age of 7 ½. It came out of nowhere and struck him hard. Here is a little bit of information about HLH…
Hemophagocytic LymphoHISTIOcytosis
It would be easy to do, wouldn’t it? To catch just the HISTIO part? Histio is easy to remember, the rest is just really unbelievable. It would be nice if you could do this with the actual disease too. Cut out the parts that are hard to deal with and just keep the parts that are easier. It would be great, really. Unfortunately the disease is actually very much like it sounds. It truly is horrendous.
In typical “Connor fashion” he managed to get this disease. A disease that strikes…drumroll please…
1.2 in every 1 million children under the age of 15
Yes, he got this on top of his other boatload of conditions, issues, and accessories. He must have figured he needed to be even more interesting to the medical profession, and get even more types of specialists involved in his care. This he accomplished!
Connor was struck with HLH at the age of 7 ½. It came out of nowhere and struck him hard. Here is a little bit of information about HLH…
"Hemophagocytic lymphohistiocytosis (HLH) is a rare but potentially fatal disease of normal but overactive histiocytes (macrophages) and lymphocytes (white blood cells).
It is characterized by the overwhelming activation of normal T lymphocytes and macrophages, invariably leading to clinical and hematologic alterations."
(source - http://www.emedicine.com/ped/TOPIC745.HTM)
“Typical symptoms of HLH besides persistent fever are pallor (paleness), jaundice, liver and spleen enlargement, and neurological symptoms, such as irritability or even seizures. The involvement of the bone marrow, the site of blood cell production, can lead to severe decline of the blood cell counts (red and white blood cells and platelets). On bone marrow examination, histiocytes that are “eating” other blood cells (also known as phagocytosis) can be detected.”
(source - http://www.histio.org/)
HLH is a very bad disease to have for any child, but especially for children who already have significant medical issues. For Connor, HLH was, as we’ve always called it, his lightning strike. HLH was the completely bizarre, out-of-nowhere disease that really made things significantly worse for him.
While we know that a severe fungal infection that led to sepsis caused Connor’s death, we also know that HLH and Mito disease contributed significantly, because they led to his body’s complete and total inability to fight the fungus. Due to this, we feel very strongly about helping to educate others about these diseases, and fundraising to find cures for them.
Connor’s buddy Joel also fought Histiocytic diseases and is now in heaven with him. Connor’s other friends: Jacob, Austin, Patrick, and Gavin are battling different forms of Histiocytosis today. Please pray for each of their families.
Please take the time to read more about HLH and other Histio diseases by checking out the Histiocytosis Association of America’s website at: http://www.histio.org/
HLH is a very bad disease to have for any child, but especially for children who already have significant medical issues. For Connor, HLH was, as we’ve always called it, his lightning strike. HLH was the completely bizarre, out-of-nowhere disease that really made things significantly worse for him.
While we know that a severe fungal infection that led to sepsis caused Connor’s death, we also know that HLH and Mito disease contributed significantly, because they led to his body’s complete and total inability to fight the fungus. Due to this, we feel very strongly about helping to educate others about these diseases, and fundraising to find cures for them.
Connor’s buddy Joel also fought Histiocytic diseases and is now in heaven with him. Connor’s other friends: Jacob, Austin, Patrick, and Gavin are battling different forms of Histiocytosis today. Please pray for each of their families.
Please take the time to read more about HLH and other Histio diseases by checking out the Histiocytosis Association of America’s website at: http://www.histio.org/
Subscribe to:
Posts (Atom)
