Our Second Connor's House Blood Drive!

We are so excited to announce our Second Blood Drive! It will be held on
January 18th, 2009 which is coming right up, so please sign up right away!
Here is the information you’ll need!!!

There are TWO ways to donate:

1.You can donate IN PERSON on Sunday, January 18th, From 12-5 at:
Bethlehem Church
758 Route 10 West
Randolph, NJ 07869

To sign up, go to: NJ BLOOD CENTER Enter your email address, birth date and sponsor code (32683) then click LOGIN. Select January 18, 2009. Choose an available time slot and confirm your appointment.

2. If you can't get to Randolph, NJ on 1/18/09, you can still help save up to three lives by donating at your local blood center. You can find a local blood center or blood drive at GIVELIFE. Please let us know you gave so we can count your donation for the Connor's House Drive.

NOTE: Please bring a form of official ID (Driver's License or signature ID) with you!

Have a Peaceful Holiday Season!

We wish you and your family a Peaceful Holiday Season! Please keep all the Connor's House families, whose children are struggling with complex health care needs, or who have lost children to these diseases in your prayers during this time of year. Thank you for your support and encouragement.
Deb, Scott and Connor, always in our hearts, Casey too!
Enjoy Connor's Christmas Smilebox below!

Make a Smilebox scrapbook

Worldwide Candle Lighting Ceremony

Next Sunday, December 14th is the Compassionate Friends Worldwide Candle Lighting Ceremony,which is held the 2nd Sunday of December every year as a remembrance of all the children who have passed away. Candles are lit and burned for one hour starting at 7 pm worldwide.

You can go to an actual service as listed on the site or hold a personal one at your own home. Last year Scott and I lit our own candles for Connor and many of his friends who have passed away. It was a very special time for us as we remembered some amazing children and their families in love and prayer.

Please light a candle and say a prayer for Connor and his friends, and our families on December 14th at 7 pm. Thank you for remembering us!

Please also support children and families through http://www.connorshouse.org this holiday season!

New Connor's House Website & Holiday Fundraiser!!!

We hope you are all having a wonderful November! We have been very busy preparing for this important day for Connor's House, and are so excited to share the official Connors House website with you: www.connorshouse.org. For some of you this will be your first introduction to Connor's House and for others it will provide more details around the vision we cast almost 2 months ago.

The mission of Connor's House is to support children with complex health care needs, together with their families, by creating a community of support helping them to embrace each day and live life to its fullest. We'd love to have you learn more about what Connor's House will be doing and to become part of the Connor's House community!

Today we are also launching our first fundraiser, GIVE THE GIFT OF HOPE! It is very simple! Instead of fretting over what to get for that 'person who has everything' on your list, this holiday season give the gift of hope by making a donation to Connor's House in their honor. For a suggested donation of $25 (of course you can donate as much as you want) we will send a personalized holiday card recognizing your gift. Information about how to participate can be found on the Home page under the title "Give the Gift of Hope this Holiday Season". We'd be thrilled if you joined us in supporting families this Holiday Season!

Thank you so much for your continuing support for our family over the years.

God bless,
Scott, Deb and Connor, always in our hearts
Casey too, of course!

Mattie J.T. Stepanek Park in Rockville, MD

White Bear Visits Mattie's Park Dedication
On Saturday, October 18th, 2008, exactly 13 months after Connor went to heaven, Scott, Deb & White Bear traveled to Rockville, MD to be part of a very special park dedication, Mattie J.T. Stepanek Park. Mattie was a wonderful inspiration to everyone who knew him, thousands around the world who only knew him through his books and television appearances, and best of all Mattie was his Mom, Jeni's, best friend and amazing son! Mattie was a poet, peace-maker and a fantastic young boy. He had a rare type of Mitochondrial disease, that took his life at almost 14 years old in 2004. His legacy lives on through his innocent, yet extremely profound poetry.
Connor loved Mattie, finding in him, another boy who had many of the same medical "accessories" yet had a wonderful voice. He heard in Mattie's poetry so much of what his heart felt, yet his voice could not yet say. Mattie gave words to many children's hearts. Thank you Mattie.
The park dedication was beautiful in so many ways. The weather was cool, but the sun warmed the day nicely. It is a huge park with 26+ acres of land! There are accessible playgrounds, tennis courts, football fields, eating areas, walking paths, benches, a dog park, an accessible "bankshots" play area, and a fantastic peace garden. In the peace garden, there are bricks commemorating many people. In this area Jeni, Mattie's Mom, placed a brick in Connor's memory. You will see this in the slide show below. This is of course very close to our hearts.
Many celebrities came to honor this special day including town, county and state officials, many from the media and even Billy Gilman, and the biggest surprise was Oprah Winfrey!
Mattie's Mom Jeni made an amazing speech which brought everyone to tears. We were so thankful for the opportunity to meet her in person after so many hours of emails and phone conversations. We hope you enjoy the slideshow of this special day. God bless Jeni!

"Flat" White Bear hikes Half Dome

On Sunday September 28, 2008 "Flat" White Bear hiked to the top of Half Dome in Yosemite National Park as part of the official Histiocytosis Hike for a Cure. We were so excited to send "Flat" White Bear off with our friends the Sanger family (Tom, Pam, Devin & Patrick) as they hiked in Yosemite. Patrick, is a handsome 6-year-old who has been battling Langerhans Cell Histiocytosis (LCH) his entire life. We were so thankful to Patrick and his family for taking "Flat" White Bear with them as they hiked in loving memory of Connor who fought HLH, and many others who have battled Histiocytic diseases. Please see the slide show below to see some pictures of their hike! To learn more about LCH, HLH and other Histiocytic diseases, please check out the HAA's website. Thanks!

,

White Bear Hikes For a Cure

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.

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!!!

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.

Make video montages at www.OneTrueMedia.com

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 California.
• 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.

In order to make Connor's House a reality in the future we are also working on the following:

• 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 “Bethlehem Church - Connor’s Fund”

Send your check to:

Connor’s Fund
c/o Bethlehem Church
758 Rt. 10
Randolph, NJ 07869
Attn: Scott Millard

We are grateful to the Board of Bethlehem Church for their support of Connor’s House and willingness to be the sponsor and administrator of Connor’s Fund while we take the steps necessary to prepare to create an independent 501(c)(3) organization for Connor’s House. 100% of all donations will be used solely for the work of Connor’s House.

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!

To donate blood in Northern NJ call 1-800-BLOODNJ
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 (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/

Mito Disease Awareness Week...

What is Mito, anyway?

Mitochondrial Disease Awareness Week is September 21st- 27th! Mitochondrial Disease... Most people hear the word "Mitochondrial" and kind of scrunch up their face... "Don't know how to say it, don't know what it means, and gosh, hope I never need to know."

"Every thirty minutes a child is born who will develop a mitochondrial disease by age 10."

It sounds like maybe this is something you might want to know something about. What do you think? Here is what the UMDF (United Mitochondrial Disease Foundation) gives as its basic definition of Mitochondrial Disease: (try to sift through the medical jargon, you can do it!)

"Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common. Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection."

In Connor's case, most of his Doctors felt that he had an underlying genetic, metabolic disease from birth that kind of "triggered" his mitochondria to fail. Thus, "mitochondrial disease". When it all comes down to it, regardless of the trigger, mitochondrial disease happened to be one of too many very challenging medical conditions Connor dealt with. Many of the other children we know and care about have also suffered from, or already passed away, due to this horrendous disease. We pray for a cure. ASAP!

Please take the time to become familiar with the basics of Mitochondrial Disease. The name is long and maybe it seems awkward (you could always just refer to it as "mito" if that makes it easier), but it is so worth taking the time to know what it is, and how it affects so many children and adults. After all, if you check on this site, you already know of at least one child and family it has deeply affected.

Below are listed those we love & care for who have also been affected by this disease. Little Mito Fighters: Alex, Lauren, Sheldon, Gavin, Brody, Teddy, Landon, Maya, Colyn, Matthew C., & Joshua. Those who beat Mito, and are in heaven with Connor today: Zach, Sam, Kyle, Mattie & Ryan.

Become aware today at...http://www.umdf.org/ & http://www.mitoaction.org/

Watch a video about Mitochondrial Disease below:

http://www.youtube.com/watch?v=UjIBu0tiXk0