My son, Nathan, is a scimitar syndrome survivor. Little Aubrey Rose also had scimitar syndrome, but did not survive. Her family created a charitable foundation in her name. I received this newsletter from the Aubrey Rose Foundation:
Our Mission is to help families caring for children with life-threatening illnesses with our focus being on the family unity.
We Strive to lift families from life’s complexities during this difficult time by providing emotional and financial support.
Hello Everyone,It’s our Anniversary – We are in our 10th Year!!! We started the Aubrey Rose Foundation on February 10, 2001, which was three months to the date of Aubrey’s death. Starting this Foundation gave us a focus to get up everyday and to live. We know that Aubrey would want us to live and to thrive and that’s exactly what we’re doing with the Foundation. Can you believe that this is the10th anniversary of the Aubrey Rose Foundation? It’s hard to believe and somewhat bittersweet.
This has been a labor of love for us and so very healing to be able to help so many children and their families. At the same time, it’s also a reminder everyday that our full-faced, always smiling, beautiful little girl, Aubrey, is no longer here with us. We also know that even though she is no longer with us, she is still touching people even in her death! We had a doctor tell us that Aubrey’s story is a story from the Bible and it needs to be told and so Jerry and I have our work cut out for us in spreading her word and we’ll be doing this forever – with a smile on our faces!!!
We thought we would share with you a little blurb that a father of one of our scholarship recipients wrote to us after hearing us speak. The writing from his heart touched us very deeply.
“I was moved by the work you do and especially by it’s inspiration. This is a tremendous example of how blessings can come from a great loss… Through this scholarship program, you are creating a stimulus for teenagers to think beyond themselves and to consider God’s purpose for their lives….While this scholarship itself is generous, more important is the opportunity to reinforce the value of life and to examine how they can and should impact the lives of others.”
We truly felt that God gave us Aubrey for a reason and her job was to make people aware of their blessings in life and to reach out and pray more and when God called Aubrey home, that’s when our job began! We have been charged with a huge mission and we welcome this gladly but we also know that we have to work hard and work smart to carry out this mission of helping millions of children and their families. 10 years is just the beginning… wait until you see what we have instore for the future!
Thank you to all of you for your love, your faith and your continuing support of the Aubrey Rose Foundation.
Love to you and your family!
Jerry, Nancy, Carly, Spencer and Saint Aubrey Hollenkamp
George and Nancy Frondorf, (Aubrey’s Grandparents)
WHAT WE ARE DOING FOR OUR TEN YEAR ANNIVERSARY
What we would like to do is celebrate! Everything to Aubrey was a party whether it was going to church or to the doctors and so whatever we do, we want to make it fun and festive and we want to put a huge smile on your face all the while doing it!
In order to do this we have some fun things up our sleeves. We will be having a Thank You Party at Aubrey Rose Foundation/Writely Sew headquarters to thank all of our sponsors, supporters, scholarship recipients, and our amazing friends of the Foundation. More details will follow on this exciting event!
In March, we are planning to kick off the “Tell Us Your Story” contest. Share your story of how Aubrey Rose Foundation has made a difference in your or your family’s life and be entered into a drawing with the chance to win great prizes
We are hoping to receive a number of great entries – so don’t forget to share your story! Over the next few months, during the contest, we will be sharing stories from contest entrants, so stay tuned!
Another challenge for us was to set some goals for the Foundation and we wanted to share these with you so that the Aubrey Rose Foundation can grow and continue helping thousands of children and their families.
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Increase awareness and understanding of the Aubrey Rose Foundation and all it has to offer/provide
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Inspire the communities to embrace our mission – helping children with life threatening illnesses
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Enhance relationships within the communities and with current key organizations/groups
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Expand relationships in other communities and around the world
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Celebrate a decade of achievements
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Set goals to achieve even more in the next ten years.
We welcome you to join us at our different programs that we have and we would love for you to attend our fundraisers as well but more importantly, we want you to share with those around you what the Aubrey Rose Foundation is all about.
If you hear of a child with a life-threatening illness, please share with the parents that we can help them; if you have an 8th grader going on to Catholic education, let them know that they can apply for a scholarship, and if you want to volunteer as a family somewhere, come and join us at one of our Ronald McDonald House themed dinner parties – you are welcome anytime! The Aubrey Rose Foundation has many different facets but the bottom line is to help put smiles on the faces of many children and their families through financial, emotional and spiritual support! We welcome you all to join us in our mission!
The Aubrey Rose Foundation is headquartered out of Cinncinati, Ohio, but their charitable deeds are far-reaching. They assist families from many parts of the country, AND they have provided life-saving surgeries to two children, Elena from Russia and Hannah from the Philippines, through their “Healing the World’s Hearts Program.”
To learn more, visit their website at www.aubreyrose.org.
Take a look at the wonderful ways the Aubrey Rose Foundation is helping families with financial needs due to the medical needs of their children:
ACCOMPLISHMENTS
We are very proud of our accomplishments in our ten years but we know we have our work cut out for us to continue on with helping families. Our job will never be done because there is always going to be another family to help and another child to pray for.
With that being said, It is important for you to know what we have accomplished in our ten years and it’s all thanks to wonderful people such as yourself for believing in the Foundation. We cannot thank you enough for all of your love, support and devotion to the Aubrey Rose Foundation.
- We are growing the Aubrey Rose Foundation and expanding it’s reach into the Dayton area. We are working on getting an office there, and we are working on partnering with Dayton’s Childrens Hospital.
- We have opened Writely Sew and Aubrey Rose Apparel where all of the proceeds go back to fund the Aubrey Rose Foundation. Writely Sew is an embroidery and embellishment company and Aubrey Rose Apparel will have lines of children’s clothing.
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We have disbursed over $150,000 to families in financial need because of their child being medically-fragile. The amount of our grants is growing in proportion to the monies coming in to Aubrey’s Foundation. We are pleased to say that we are able to help more families with bigger amounts than we’ve been able to in the past. This total is strictly for grants to families and does not include our other programs.
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Our Healing the World’s Hearts Program has brought two different children to Cincinnati Children’s Hospital for open-heart surgery. We brought Elena from Russia and Hannah from the Philippines for their life-saving surgeries and Aubrey’s Foundation took care of their transportation, their stays at the Ronald McDonald House, the surgeries and their incidentals associated with being out of their country.
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We organized 36 themed dinner parties complete with crafts for the children for the Ronald McDonald House families to boost these families spirits so they can carry on taking care of their sick child. We have touched close to 2000 families who have lived at Ronald McDonald House because of our dinner parties.
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Hosted 8 Holiday Parties and organized buying toys and gifts to brighten the lives of sick children at Cincinnati Children’s Hospital. These families will never forget this Holiday Party because we try to make this the most memorable event that will be able to stay with them forever.
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Hosted six Heart Transplant Picnics during the summer months. This themed picnic is for the heart transplant patients and their immediate family members along with the staff of the Heart Center at Cincinnati Children’s Hospital. This is for the patient and their families to start a network of friends in the unique world they live in because of the transplant.
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Supplied camping items for Camp Joyful Hearts. We gave each camper Aubrey Rose Foundation logo’d items that will help them with their week at camp, such as backpacks filled with an umbrella, rain poncho, flashlight, ball cap, camera, beach ball and beach towel.
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Hosted six Hopeful Hearts for Children themed picnics complete with decorations, crafts and dinner so that families of “Heart Kids” can start to build lasting relationships to help families cope.
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Our “Aubrey’s Angels” team for the Heart Mini Marathon for the American Heart Association has raised over $100,000 to help wipe out the #1 killer – heart disease and the #3 killer – strokes.
The Aubrey Rose Foundation is worthy of support. Click here to donate.
Tags: Aubrey Rose Foundation, heart surgery, Nathan's Prayer
A tribute to the fine health care professionals who work to repair little hearts. Written by Sylvie Stephens.
I first came to the PICU after Sydney’s open heart surgery. Sydney was in bed #13. Jane was her nurse. Ingrid was the CRN. There was no need to adjust to the new surroundings. I was always focused on my baby. After three months in the NICU, seeing her with tubes all around her was my reality. She was my beautiful baby, she was comfortable and sleeping. I was relieved she made it through surgery ok.
A gentle doctor began to talk to me. He had the kindest, bluest eyes I have ever seen. The kind that take you straight into the soul of a person. We spoke about his practice and how Sydney’s care would be handled in the PICU. This doctor had already met my Sydney, up in the NICU, to fix her central line. After that procedure was over, my Syd-Syd opened her blue eyes wide. This doctor bent down gently and said “Well, hello!” The NI nurses told me this story and his name. He’ll be taking care of my baby, I smiled to myself. I was so moved by the kindness of this doctor, I would draw a big gigantic heart in the air whenever I spoke about him to the PI nurses. This doctor was the “Originator of big gigantic hearts.”
Sylvie's sweet angel, Sydney
Then there was “Be still, my heart.” This doctor knew Sydney before she was born. He took time to explain what he saw on the ultrasound and patiently drew anatomical diagrams to describe her condition. This doctor always had hope in his eyes, patted my shoulder gently when we spoke and he wanted to save her. He wanted to save her for me.
Then there was “Be still, Sydney’s heart.” This doctor was Sydney’s favorite! Fuss monkey? Not around this guy. There was always a smile, even if only in her eyes, for this man. Rumors of Sydney’s flirtations circled around the NI. I would see it with my own eyes in the PI and was horrified. “Syd-Syd, he is a married man,” I would lecture my daughter. But she would do, as always, whatever she wanted.
Then, there is “Three gigantic hearts,” a doctor so special, so brilliant, so poetic. We met in NI when Sydney was about a month old. He took time to decipher her pathology, to evaluate her as a whole system, to try to connect the pieces that didn’t quite fit. He appreciated Sydney was remarkable. He saw beauty where there was complexity, hope beyond the medical realm, and gave me advice and encouragement to be the best mother I could be.
There were many gigantic hearts. I survive Sydney’s physical absence with the memory of them. Sydney’s doctors, nurses, RTs, support staff… acts of kindness, fascinating medical skill, faith in the unexpected and grace always. Her loss is painful, but the love I received in this setting is unforgettable.
It was intensive care for Sydney, for her heart and for me, for my heart.
Much love, Sylvie Stephens, Sydney’s Mom
Tags: heart surgery, Sylvie Stephens
"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." (Romans 8:28)
Kassandra
I received the following message today from Kassandra’s mother:
“We got a bit of bad news on Monday…Kassandra is going to have to go thru surgery again. It is so stressful and frustrating. She was doing so well, or so I had thought…she has been experiencing all of the signs that she should have been experiencing in the first place. They are going to try catheterization first and if that doesn’t work, then open heart surgery again. I feel so helpless. My 4 year old should be loving life and right now…let’s just say that it is very rare to see her smile these days.”
Please hold Kassandra, her mother Stephaine, and her family in your prayers. It is difficult enough to go through surgery once, but to learn you may have to do it again is distressing to a child and to the child’s family.
Tags: heart surgery
