I’ve continued reading about other families who have had children with Cockayne Syndrome.
All the stories are hard to read and I always cry.
But ignorance is not bliss with this disease. I need to know what to expect so that we can give Knox the best care that we can while he’s here with us.
For example, instead of saying to myself every day, “We have at least 3-7 years with him,” I now know that any of his organs could fail at any time. The small comfort I took from the “average lifespan of CS2” is gone.
I try and live each day as if it’s the last, kissing him and playing with him and smelling his sweet baby smell as much as I can. I can’t imagine not being able to smell him…moms, you know what I mean.
As hard as it is, it helps to know that there are other families on the planet that have faced this tragic disease. There aren’t many, but there are some.
I’ve learned that some families have lost not only one child to CS, but two.
This happens when a child with CS goes undiagnosed for a while because the disease is so rare. Doctors can’t figure out what’s wrong until the child is a few years old. Then, by the time the diagnosis is reached, a sibling has come along. And the second child has CS, too. It seems so cruel and unfair.
The parents had no clue. They didn’t know the condition was genetic.
One such family lives across the ocean and they had the only two children with Type II Cockayne Syndrome in Denmark.
Both beautiful boys are in heaven now. You can read about this family’s heart-breaking journey online. It was while reading their information and looking at the photos they shared with the world that I began to understand what was happening to Knox.
I’m thankful for their willingness to share what they’ve been through so that families like ours can obtain a diagnosis sooner.
I drew a picture in my sketchbook a few weeks ago, thinking of this remarkable mother and her two sons who are now “butteflies”.
The white flowers are ‘Margeurite Daisies”, the national flower of Denmark.
I copied the design onto a small framed canvas and colored it with pastel pencils and a blender.
They live near the sea, so I added the lighthouse with the Danish flag on top.
I rubbed it with some Walnut Ink.
Then I added some color back into it in a few areas with the pastels.
I’ve been mulling over some ideas of ways to raise money for CS research. Printing my butterfly drawings on greeting cards and selling them on Etsy is the only thing I’ve come up with so far. It’s a small thing, but I want to do SOMETHING. If you have any other ideas, please comment or send me a pm.
More awareness=More funds=More Research=A CURE.
Scarlett,
An art/photography show fundraiser would also be a great way to raise money. Your art and photography are so beautiful!
nita
Scarlett, What a touching tribute to this Danish mom; your attention to detail is such a beautiful way to honor her.
Still praying!
Noel
The Holman family is keeping your family in their prayers. I pray that each day you have with Knox will be a blessing, and that each member of your family will feel God’s love in it’s fullest measure.
Thanks so much, Sarah, I appreciate your kind words and prayers for Knox and our family.
Love you all,
Scarlett
Awareness is key; I had never heard of this. Their story is so sad and touching.
I will think of butterflies differently, now. Reaching for a cure, not fancy, not free. I love your idea and think you should do just that~! Every little bit helps; I say yes, do it~ xXx
Thanks for sharing; your drawings are lovely and profound~
When You do decide to open your shop, let me know I will post about it on my blog. @>——- Yes, I miss the baby scent; I know what you mean~
You’re awesome Ellen, thanks so much. I hope I can get something going real soon!
Scarlett
An enlightening post and lovely artwork!
Sandra
Sandra Evertson! I’m honored to have you stop by today. Your name is in so many of my favorite magazines–I’m a big fan of your work. 🙂
Thanks so much!
Scarlett
Scarlett, in addition to funds, your art has the potential to bring a lot of awareness to the cause! I think you should definitely do this. Here’s something else too – Parents magazine has a section called “Power of Parents” where a parent may nominate an organization or community service project they are involved in or started. If chosen, the magazine donates $500 and prints information on the parents and the organization on an upcoming issue. I know $500 may not seem like a lot for medical research, but I think the awareness piece is important too for reaching potential donors nationwide.
Wonderful idea! Thanks!!!
Absolutely gorgeous art, Scarlett – those butterflies look so realistic and touchable – simply beautiful!! I love the idea of an art/photography fundraiser, and also think the Parents’ magazine idea is wonderful – definitely worth looking into. I keep looking at those butterflies – they look so close and touchable!
Beautiful artwork Scarlett, you are so talented!
Our twins are seven months old and have a rare disorder called Miller-Dieker Syndrome. They are missing part of their 17th chromosomes. They seem almost fine now, but we are beginning to see symptoms that will eventually lead to intractable seizures, Cerebral Palsy, possibly blindness, and death. The average life expectancy for children with our disease is 2, though the rare child will live into their twenties. I feel what you are going through and I love your idea about the cards.
Oh Shannon, bless your heart and thank you for sharing…no body ever prepared us for this did they? And there’s no manual for this ride. I will be thinking of your precious babies. I’ve never heard of Miller-Dieker, but I had never heard of Cockayne’s either, until it broke into my life and crushed my hopes. The expected lifespan for CS2 is 7, though from all the famlies I’ve connected with so far, it seems much closer to 3 or 4. But I guess we can’t think about that can we? Do you have a CaringBridge site? I’d love to see a photo of your little ones and keep up with how you all are doing. Let me know and hope you stay in touch! Much peace sweet mother, Scarlett