Medical Help for Our One in a Million

Campaign Created by: Mark Cartwright
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The funds from this campaign will be received by Mark Cartwright.

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Goal : $10,000

Raised : $1,100

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On July 22, 2020, in the middle of this Pandemic, my wife and I were blessed with fraternal twin girls, Alice and Danielle.That day, we were equally blessed by sharp doctors that noticed something a little different about Danielle and even a suspicion on what it might be.  They didn't give us any information at the time, but did suggest we get CAT scans and schedule a visit with a neurologist within the first week or so after her being able to come home -- born at 34 weeks, they spent the first week of life in NICU.

Per doctor's request, we did follow up with the neurologist that they recommended as well as completed a DNA scan to verify their suspicions.  We did not yet have the results back when we saw the Nero, but we did see by then what they had suspected and he agreed that it seemed likely.  Shortly after that (at around 3 weeks old) we got validation that Danielle had a mutation in the RUNX2 gene, resulting in a condition called Cleidocranial Dysplasia, or CCD for short. This disorder affects less than 1 in a million births world-wide.  More, neither her mother or I are carriers and her mutation is spontaneous, which happens only in 2% of those with this condition.


For now, this means that her "soft spot", common with all newborns, instead of being a ~ 2" circle in the top of her head, is instead the vast majority of the top of her skull, from the top of her occipital to just over her eyes and starting about halfway up from her ears -- the skull is simply not there.  Additionally, she has severely stunted or possibly missing clavicles (collar bones).  Later in life the additional challenges will be great: she will have issues with her teeth, require multiple surgeries for her head to infuse a titanium mesh to substitute for missing skull and a high probability of other spurs in various parts of her body, such as extra ribs that do not grow with the others that might need to be removed.

Today she is already wearing a helmet that will help try to shape her head.  Her excessively flat head is not incredibly uncommon in even "normal" infants, but with her it was a special challenge since the softness of her head would not allow for the use of normal helmet materials and causes her more discomfort than what most would have to endure.  More, where most infants usually on need to wear head-shaping helmets for 6-12 weeks or so, Danielle will be in one, for shaping or protection, for the majority of her young life, at least until she can have surgery to reinforce and protect her brain where the absent skull cannot.

Which brings us to where we are today.  We are struggling to not only take care of twin girls who are now just shy of 6 months old as of the time of this writing, but dealing with one that has unusual special needs, including extra out of pocket costs for doctor's visits since Danielle has to see several specialists including Neurology, ENT, Genetic Counseling and Orthopedics, but the massive costs that insurance won't cover including her future dental bills and surgeries, much of which the insurance company considers "cosmetic" so will not pay for at all. So here we are, hat in hand, hoping for yet more blessings.

Thank you for taking the time to read this.  We'll be sure to keep this updated as we progress through her treatments.  I also ask that, if interested, you take the time to read about this disorder.  A great resource is CCD Smiles -- founded by one of the actors from "Stranger Things" who also has the disorder, it's a great resource for finding out about it means to have and live with CCD.

UPDATES

Update #8
February 23, 2021
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Turns out that it was not (only?) a fever rash that Danielle had. She's been diagnosed with Roseola infantum (Sixth disease) which is caused by a very common virus (nearly every human on the planet has it) and tends to manifest this way in young children. It's uncomfortable, but manageable. No cure, just treat the symptoms. Seems like our little girl just can't catch a break lately! - DAD

Doctor update 2/8/21
February 10, 2021
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First, let me aplogize for the lack of recent updates.  It's been full throttle for the last couple weeks, but such is the nature of young children, as most of us know!

Yesterday Danielle saw her orthopedic doctor again, after some inconclusive results on Friday of last week.  Apparently, she's absent the bottom 2 ribs, one on each side.  This shouldn't cause any complications in itself, and is apparently common for those with her disorder.

However, we also discovered that her legs have an odd shape to the bone, which has a very high chance of causing her gait to be off once she starts walking.  This means that as soon as she's starting to toddle she will also begin physical therapy to try to ensure that she is able to walk as normal as possible as she gets older.  Of course, her physical development is stunted for her age, so it's impossible right now to predict when that might be.  But her mother and I are ready to do whatever is necessary to be sure she has the best possible care we can provide, in no small part aided by the good folks here in the form of both prayer and donation; we couldn't be more blessed for the support we've gotten for our little angel.

Please keep her in your prayers.  The next year is going to be quite a big one, and will determine much of how well she's able to overcome many of the characteristics of the disorder.

God Bless.

-- Dad

Update #5 Thank you
January 31, 2021
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Thank you all so much for the support you have shown Danielle. Our family is very gateful. If you would like to keep up to date ( everyday with pictures and updates for  Danielle) she has a facebook page, please come and like the page. https://www.facebook.com/OurOneInAMillion.  Again, thank you everyone

Update #5 Thank you
January 31, 2021
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Thank you all so much for the support you have shown Danielle. Our family is very gateful. If you would like to keep up to date ( everyday with pictures and updates for  Danielle) she has a facebook page, please come and like the page. https://www.facebook.com/OurOneInAMillion.  Again, thank you everyone

Update #4
January 20, 2021
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I wanted to take a moment to thank everyone that has prayed for us or donated.  You truly are some of the best folks a family could ask for! Dani has more love and compassion coming her way that what I thought was even still left in the world.

THANK YOU from her parents. One day she'll be able to thank you herself, too, and in no small part due to your devotion to her.

Update #3
January 17, 2021
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Great news from the neurologist yesterday (Friday 1/15/21), the cyst in her head is much smaller. She will be able to start wearing her helmet again full time and they will start her surgeries when she is around 2. We go back again in 6 months for more CTs. Keep Dani in your prayers please.

Thank you!
January 12, 2021
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I just wanted to post an update to say THANK YOU to all that have prayed or donated for us so far.  The outpouring of support has been amazing both from our family and friends as well as those we haven't had opprotunity to meet yet.  we are TRULY BLESSED to have such an amazing support network.  With your help, thoughts and prayers I'm certain that we'll be able to make sure our baby girl, our one in a million, get the care she needs and deserves!

Some clarification
January 11, 2021
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It seems that some think by the title that we somehow would like to raise $1M.  While that'd be great as we could in turn give the majority over to the CCD Smiles Foundation, it's not the case. I've attempted to change the title to try to help make that more clear but I don't know if it works.

Additionally, thank you to the donors that have already chosen to help us out!  Every jorney has a beginning and this is ours.  We're blessed to have people that care about us and our little girl!

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