They are great. When my daughter had surgery they sent her a care package with pajamas, a blanket,hat,socks,and a toy. They also sent small essential toiletries and snacks for my husband and I to pack for the hospital.
During such a hard time learning our child was going to need surgery for craniosynostosis ,it was so special to learn that there was a whole community of people who had been there, and were praying us through. We are beyond thankful for Cranio Care bears!
The Cranio Care Bears provided our family with comforting items for my husband and I and for our son before his surgery at 4 1/2 months old. It helped us feel not so alone in such a scary time.
This is a fantastic nonprofit group! These moms give so much time and support to each and everyone of us that need support going through tough times before, during and after our journey with our kids that have craniosynostosis and other anomalies of the skull. They give us so much comfort and the care packages just help encourage us before the surgical journey begins.
As soon as my baby was diagnosed with sagital cranyosinostosis I stated looking for information that would clear all the doubts I had. I came across cranio care bears an awesome organization. I found out that what they do apart from spreading awareness about the condition is to send a care package to families. Ours included things for me to bring to the hospital along with pijamas, blanket and toy for my baby which he loved. Receiving our package made me feel special knowing that someone is taking the time to do something this nice to try and make our difficult time more bearable. I really appreciate the prayer chain full of good thoughts for our family and the card we received sending prayers for my baby.
Cranio Care Bears is by far the most generous and caring charity I have encountered. Faced with this terrifying diagnosis with our son, Cranio Care Bears provided such comfort in a huge time of need. Words cannot express my gratitude for this organization
Great organization that provides care packages for free to families with a child undergoing craniosynostosis surgery. The packages have items for you and your baby to use while in the hospital and range from a blanket to toothpaste. So helpful when you’re overwhelmed with you child’s surgery and forget to pack something. By far the best was the prayer chain, we still have it hanging in our child’s room. Shelby & Summer are both very kind and responsive too!
The special treat sent in the mail was a bright spot after endoscopic surgery. Thank you for making a hard time a little easier!
My son Dominic was diagnosed with Craniosynostosis and had a CVR in March, a parent from a support group recommended contacting the Cranio care bears charity which I did, they were very supportive and sent me a care package all the way to UK, the work they do for these kids is fabulous and is good for parents too as it is a worrying time.
Mein Kind hatte eine Frontalnahtsynostose. Ich habe von dieser Organisation über Facebook gehört und ein package angefordert. Es waren tolle goodies drin. Ich fand es super, dass man mit dieser Krabkheit nicht alleib ist und so wussten wir immer, es sind noch andere betroffen und es gibt Menschen die uns unterstützen und an uns denken.
Wir haben nur durch Zufall raus gefunden, was unser Sohn hat. Die Kinderärztin hatte davon noch nie gehört. Leider kein Einzelfall in Deutschland.
Ihr seid toll, macht weiter so
Our daughter is approaching her 1 years since our CVR. She was 10 months when we had the surgery. The support, knowledge, and care that this group provided really helped us get thru the process. It is so hard to see your child go thru such an extreme surgery as such a young age. Nothing can ever prepare you for what you may endure during the process because every case is different but Cranio Care Bears provides a care package that I can truly say that helped so much. You don’t know what you may or may not need during the process and this package provided those small things that mean so much. I recommend this group to anyone that is dealing with our beautiful Cranio children. Thank you for the support and love during such an hard time.
This organization got me through one of the worst times of my life. The care package that I received before my sons skull surgery meant more to me than they will ever know. It’s little things like the prayer chain, the journal, the socks that I never would’ve thought about packing for myself, the candy and the card with the prayer on it. What an amazing group of women that want to support fellow crania warriors.
My daughter is 12 years old and just had her 4th cranial surgery. I wish I would have known about Cranio Care Bears for her previous surgeries!! They are amazing!!!!!! My daughter received her care package and it motivated her to get out of bed and play with the stuff that was sent to her!! They are so generous and we fell in love with their prayer chains!! My daughter can’t wait to feel better so she can make prayer links for all of the other cranio warriors!
This organization provided comfort for my family during a trying time when my son was diagnosed with a rare skull condition. Their touching generosity is why I give back to this organization - every single year.
We love this group! They were so kind and willing to answer any questions we had before our son’s surgery. They also sent out a free care package that was AMAZING! It had exactly what we needed.
Cranio Care Bears is an amazing non-profit. They provide personal care packages and beautiful linked ribbons decorated in prayers for children having skull surgery. The most amazing thing about this non-profit is that is run by two mom's who's children were affected by craniosynostosis. In addition to the care packages they spread awareness about cranio and connect families and parents in need of support. Most people do not know what craniosynostosis is until it happens to their child or a child they love and its amazing to find this group to lean on for support during hard times. They have put a smile on our face more than once and we are so blessed to have stumbled across them!!!!
They are the best .. When my grand was going to have surgery the package wouldn't make it to the house so they sent it to the hotel the day she arrived. Love these people
My 3 month old son just had surgery for Craniosynostosis. Cranio Care Bears sent me a wonderful care package with things for the baby and for our hospital stay. It helped us feel more prepared and that someone genuinely cared.
This is by far the best thing I have ever done. I found out my daughter needed surgery when she was 2 months old. She didn't get to do surgery until 5 months. During that time I was crazy stressed and just over all a mess. Shelby found me on a Facebook page and I got sent over to this charity. The care package gave us something to look forward too, and when surgery came and we got it, it was worth the wait. We had snacks, tea, hygiene products, and omg socks! While trying to pack I was a wreck and packed all the wrong things and forgot hygiene products and socks. Hospital floors get super cold! It was so helpful in more ways than one, the ladies that do the packages do it from their heart, and it shows. They still reach out to see how we are doing. It's not just a package your getting, it's support! Thank you cranio Care Bears!
We were blessed to learn of Cranio Care Bears. Our grandson has Craniosynotosis. He had no soft spot on his head, the sutures had already grown together. He required a Sagital CVR surgery to repair and reshape his skull, to give his brain room to grow. Through Cranio Care Bears we were able to learn more about procedures and what to expect from other parents who had Been down this path. A week before the surgery Jaxon and his Momma received a care package FULL of items to help during his hospital stay. A prayer chain, books, toys, a blanket, an outfit and little hat that fit his larger then normal head, for Jaxon. There was personal hygiene items, footies, snacks, gum, mints, and breakfast bars, for his Momma. These items really did make the stay better. Most of all we knew they were there for us if we had questions and that the power of prayers from the others on the site were with Jaxon.
We found out that my daughter was going to be born with Craniosynostosis when I was 37 weeks along! Searching for support was on my first mind after finding this out. I came across cranio Care Bears and they have been great! We ordered a care package before her surgery at one month! What we got was astonishing! Anything I needed and it beat the hospitals stuff along with things for my daughter! A sleeper a blanket a few toys :-) we have since bought items to show how proud we are of our baby girl who has sagittal craniosynostosis! This group is amazing and has helped us through a tough time in our lives!
This is truly an amazing organization. They helped us get through a tough time. Thank you!
After having my twins at 28 weeks and a 3 month stay in the NICU we found out one twin had Sagital crainosynisyosis and would require yet another surgery. The Craino Care Bares sent us a wonderful care package. This package included pj's, blanky, toys, a purple hat, pacifiers, and some things I sure I am forgetting for my son. Plus personal care items, snacks and gum for myself. Up until I found this organization I felt so alone. The Craino Care Bares made me feel like I was part of a community and actually had some support. Regardless of how rare crainosynisyosis is I did not feel alone any more. My son's surgery went very well and he has recovered well. Thank you Craino Care Bares you are amazing!!
Our son, Heath, was born with a very rare form of craniosynostosis, his was frontosphenoidal. After doing some research on craniosynostosis, we found Cranio Care Bears and what a blessing it was. Summer, one of the founders of the organization, her son had the same type of craniosynostosis. I emailed her our story and the next day I received an email back with encouraging words. A few days before Heath's surgery we received his care package. In the midst of fear, this package of goodies made our hearts happy. Heath will always have his prayer chain to look back on, and pictures of him in his handmade hat they provided, as well as all the other items they had that was so helpful for his hospital stay. We can not thank Cranio Care Bears enough for the support they provided in the most fearful time in our lives. Thank you, thank you, thank you!
A great organization that has helped my family and 9 week old son who had to have surgery. So thankful
Cranio Care Bears offered us a tremendous amount of support at a time when we felt very much alone. Having a child diagnosed with a relatively rare condition is very isolating and it was so nice to have a group pull us in and offer support. The care package they sent for our daughter was a bright spot at a challenging time - it was so nice to have that extra support!
This group is amazing. We found out that our one month old son needed surgery in less than a months notice for something we had never heard of. This group helped educate us, connect us to a community of others who have been through the same thing and to top it all off, sent us the most thoughtful surgery care package that has me crying tears of joy that there are strangers out there willing to help support those in need without any asks back. I am so grateful and they have inspired me to pay it forward. XO
This group helped up get through the most difficult time in our child's life. they went above and beyond what I thought with their website and support package we felt more prepared for our difficult journey. I emailed question about recovery after the fact and was responded to within the day! I love cranio care bears!!
With something so stressful going on with my baby it was extremely comforting to have this care package arrive in time to make me feel prepared, comforted and not alone. These packages are put together by people who have been in my situation, they understand. I can't thank them enough!
My grandson is afflicted with a rare form of craneosynostosis. I consider myself well educated, but I had never heard of this birth defect. Their information is enlightening and the help parents and caregivers receive is invaluable. This group is supportive and giving. I cannot thank them enough for the encouragement and support they have shown my daughter and her family as they navigate an unknown highway called Craneosynostosis.
A beautiful group who send love, help and care to so many.nothing is worse than laying your baby. Into the arms of a surgeon. They sent my grandson a care package free of charge all the way to Australia, filled with toys clothes, prayers and thing for mum too . I was so impressed I reimbursed them the money for postage and have donated in other ways too. They have a book that I have purchased to help my grandson and his big brother can understand craniosynostosid. They are always available with advice.n
When my daughter was diagnosed with craniosynostosis, I researched everything I could on it. I finally found craniocarebears! Through them I was able to see other people's stories and talk with them about their experiences! The creators of this organization kept in contact via email (without automated replies!) which meant so much more getting to know them on a personal level. Their care package meant so much to my daughter and me. The items were everything we would need at the hospital along with items to make my daughter smile in a not so happy time. Everything about this organization is wonderful and they will always hold a special place in our hearts! They are such great people with big hearts!
Cranio Care Bears is an awesome organization. When my son was diagnosed with cranisynostosis they mailed me a care pack with some many useful things. I felt like I had a great support system thatnks to them.
My baby boy was diagnosed with sagittal and left coronal at birth as he was rather disfigured. The care package for his surgery was wonderful and uplifting, to think a charity in the US can send something to the UK for free is amazing. The items arrived when my friend was here and made her cry!! Thankyou for your support! Xx
My son was extremely late being diagnosed with a birth defect that should have been caught and surgically treated in infancy. As a result of it having been missed for almost 9 yrs my son has suffered many struggles from severe speech delay, language based learning disabilities, headaches by 8 yrs old and a serious academic regression at the start of grade three. Now suspected seizures. For yrs we suspected autism and had 3 psychological assessments done. He is nowhere on the spectrum. Almost 9 and still running for answers. Finally the scariest diagnosis. Skull reconstruction is the only thing to release the Internal pressure in his skull, hopefully releaving the pressure and stopping his debilitating headaches and allowing him for the first time, some quality of life.
This organization with their thoughtfulness and outreach of support at the scariest time of our lives, has helped make a scary and uncertain time, one that was a bit more uplifted with a light at the end of the tunnel.
There are no words to express the smile it brings to the face of a Mom facing such a difficult road ahead.
Cranio Care Bears, Thank You.
My daughter was diagnosed with sagittal craniosynostosis at 3 months old. i came across this charity while trying to find some info which is very scarce.As us cranio moms know it is very hard to find information and support and this organization is doing just that, offering valid information to the anxious parents and showing that someone out there genuinely cares and is here to offer support and so much more. I personally know nobody that has gone through what i am with my child so real support is hard to find. These two woman are truly amazing. I am very appreciative!
When our son was diagnosed with sagittal craniosynostosis the day after he was born we were completely overwhelmed and distraught. We found Cranio Care Bears online and that was the beginning of feeling like we were not on this journey alone. Their website had success stories that made us feel supported and loved. Our son received his Cranio Care Bears package 10 days before his surgery and it brought us all to tears with the amount of generosity and caring that went into the package. It had clothes, blankets, toys, snacks for us, chap stick, and many more items. Most amazingly it included hand written ribbons that formed a beautiful prayer chain that we could place on our sons bed as well as advice on what to pack. They really go above and beyond and the love they spread is amazing.
Our son was diagnosed with Craniosynostosis, but we were pretty sure that was what was going on before the diagonisis through our own research. We found Cranio Care Bears and what a great organization it is! The support they give to families during such a stressful and scary time is invaluable. They make it so easy to donate back and when you do it, you know exactly how you are helping others who are in the same boat as you!
They have provided so much information that we need in a time that is very scary. Thank you Cranio Care Bears!
My granddaughter was diagnosed with metopic craniosynotosis when she was 10 months old. She had her operation just after her first birthday. The time in between and shortly after her surgery was very scary. We never knew about Cranio problems but we came across Cranio Care Bears when searching for answers. Not only are they educational but they send care packages that are crammed with items for baby and the parents. Cranio Care Bears is a Godsend to anyone with a family member facing Cranio surgery. They are angels in disguise.
Amazing organization! They help out cranio families by sending packages with prayer chains, candy, toiletries, pjs for kiddos, and many other things at no cost
Their care packages not only come with a lot of hospital essentials, they come full of love and hope. My husband and I were both brought to tears when we received our package. We were both so scared, but receiving this package, and reading the countless Cranio journeys assured us that we were not alone, & that our baby boy would be okay! THANK YOU FOR ALL YOU DO!
I can't thank Cranio Care Bears enough for the prayer, support, and our awesome care package during this time in my family's life. Cranio Care Bears was one of the first sites I stumbled upon while researching my son's craniosysnostosis--which I had never even heard of prior to his diagnosis. It was a pretty frightening time for us. Their site had links to support groups and info on Cranio. They prayed for my son from the very beginning when we were getting the confirmation CT scan to the day he actually had his surgery. I can't explain how important that support was for us--we weren't alone in any of this. The care packages are phenomenal! They are so thoughtful and practical. Our family has never had to experience a surgery before, this was all new. The packages include items for during and after the surgery that only an experienced parent would know you'd need--and so generous, and filled to the brim with encouragement and love. In our particular case, we were in a bit of a financial bind at the time of our son's surgery, so our package was a real blessing to us. I will always hold Cranio Care Bears dear. Thank you to everyone--from the donors, to the volunteers, to the fellow families who offer thoughts and prayers for each others' children through their surgeries. This is wonderful non-profit group.
I was lucky to find this website. My son was diagnosed at 2 and half months. The doctor didn't want to wait long. He wanted the surgery done within two weeks. I looked on pinterest to see if I could helmet decorations idea and I stumble on the cranio care bear website. It was so helpful to find other mom who had gone through what I was about to go through. The care package was so nice and sweet. Kolton is now 10 months post op and he is the wildest little boy. He will climb on anything.
I was lucky enough to stumble upon this website the day of my sons cranio surgery. Summer replied to my care package request very quickly with kind words and blessings for my sons surgery and quick recovery. The package they sent is so amazing and appreciated. It is so amazing to me all the work these two angels put into the packages and emails that they send to families all over the world. What a wonderful program this is.
I hold Cranio Care Bears near and dear to my heart! I have been extremely fortunate to have met both of the founders. They have the most huge hearts! The care package was packed with so much love and was tremendously useful during our hospital stay. I cannot say enough good things about them! If I could give them more than 5 stars, I would!
Cranio Care Bears was the friend my family most needed during the weeks and months surrounding my son, Calvin's, diagnosis and surgery. The website shared success stories that gave us hope, the care package was delivered full of useful items for us, Cal's parents, for Calvin, and a prayer chain that we all needed for strength. This is an amazing organization and I can't imagine how we would have coped without them.
I cannot begin to express how grateful I am to Cranio Care Bears. There was so much support both emotionally and educationally... I don't know how I would have gotten through the wait from diagnosis to surgery without the support. The care package with recommended packing list for surgery was great too!
The Cranio Care Bears organization...I get choked up just thinking about the comfort they brought to me and my family in the months leading up to my sons CVR surgery. The success stories, the before and after pictures and the informative tabs on their web page prepared me for the Cranio surgery and the care package, the care package was the most beautiful gift I have ever received.
I open the mail and here in this little box are all these small incredibly meaningful items. As I took each one out I knew a parent/caregiver made this box or made the box possible. There were tea packets and chap-stick, pain reliever and socks. The list goes on. It may not seem like much if I list the items to you but trust me when I tell you it grabs a hold of your heart. Just knowing that at some point the person who put this box together felt the same exact anxiety, fear, hope and pain that you feel in anticipation of your child's surgery is comforting.
The prayer chain is beautiful, it provides a sort of strength that I cannot describe. It went up on his hospital bed then onto his stroller as we made it home. It now hangs in his nursery. It is cherished.
I will never forget the support that made its way out of that little box. Thank you! Thank you! Thank you!
Cranio Care Bears was amazing during a very difficult time for our family, what they do really makes a difference. The care packages are great!!
So thankful for the awesome care package they sent prior to my son's surgery!
The most amazingly helpful and supportive group! Cranio Care Bares helped us during the toughest time of our lives - our 2 month old baby's skull surgery! Cranio Care Bears sent us a wonderful care package filled with goodies that we used during our hospital stay while our baby was in surgery and later recovering. They also have a facebook page, which is updated daily. The people running Cranio Care Bears are the most caring, selfless, and hardworking people I've met. Thank you, Cranio Care Bears! You bring hope and inspiration to all of us!!
Cranio Care Bears helped us during the toughest time in our lives as first time parents to a precious baby girl. Our daughter was diagnosed with multiple suture craniosynostosis soon after her birth and the shock and fear was total. She had her surgery, which was a success, when she was four months old. The care package we received from Cranio Care Bears was touching in many ways; what an amazing feeling to know that people across the world were thinking and praying for our little daughter and us!
We got an amazing care package from these amazing women prior to our son's surgery. Not only did we receive products we would need while in the hospital (toiletries, snacks, pjs,) we also got a list of suggested items to pack, toys for our son, a prayer chain, and a notepad to journal in. The care package was such a thoughtful way to show we were not alone and provide things we would need! They asked for prayer the day of surgery via Facebook and followed up with an email after surgery to see how he was! Family donated to cranio bears and they sent us an email letting us know. I also love being able to buy bibs, coffee traveling mug etc in honor of what our little man and to know the money goes to a great cause. I think they go above and beyond caring for other moms who were in their same situation years ago!!!
My William had cranial surgery about 8 months ago. My husband and I were extremely worried and in dread of all our child would have to face. This wonderful organization provided love, support, prayers, awareness, a forum for connection with other parents and a sweet care package including a prayer chain which we treasured. The support, love, caring helped us get through this incredibly hard time.
my son had cranio surgery and the kind ladies of the cranio Care Bears sent a care package that far exceeded my expectations! cranio Care Bears is the best organization I've ever had the privilege of knowing about! so grateful for all they do for famiies like mine!!
Cranio Care Bears is a wonderful organization run by people who truly care about each "care bear" they serve. My nephew is a cranio kid and had his surgery several months ago. Cranio Care Bears sent my nephew, brother and sister-in-law some goodies and words of wisdom before his surgery. I know my brother and sister-in-law truly appreciated the support, advice and encouragement they received from this organization. Each child is treated with love and you can feel what an inclusive and warm family this organization creates. I love this organization and will be donating to them each year in my godson's honor. Thank you, Cranio Care Bears!!
Cranio Care Bears is an absolutely incredible organization there for our family in the scariest time of our lives. The volunteers behind the scenes do an incredible job creating the care packages and sending such love and support during the darkest days. We couldn't have made it through our craniostynosis diagnosis if it weren't for the support of Cranio Care Bears
The organization Cranio Care Bears is so special! From the support, to the care package, and follow ups they have been great! The email that I just received from them was so sweet, they truly care about you and your child! You don't find people like this in the world these days. I just wanted to make a shout out to such amazing people! Thank you so much for everything Cranio Care Bears! SO Happy to have had your support to help make this journey easier! Happy to be on the other side! ~From Metopic Cranio Mom.
The ladies at CCB are wonderful! When my daughter was diagnosed in 2008 it was probably the scariest moment of my life that far and i faced it alone with no one who could be a listening ear on the many nights i cried wondering why my baby, but she made it thru just fine and our life continued on as normal as it shouldve. then in spring of 2012 she started having severe headaches and back to the drs we went only to find out that she would have to undergo not only one more skull surgery but 2 and that overwhelming feeling that id felt 4yrs earlier returned but thus time i yped into the search box on Facebook "cranio" and up popped an entire screen full of pages that were set up as support bwtwoeks for parents of cranio kids. it is there i git in touch with the ladies at CCB and they were absolutely wonderful, when i had questions they were always quit k to help did an answer if they didn't know it already and the day that my little girl went in fir surgery they made sure to talk to me to see how things were going...they were a great support system! They also sent my little girl a wonderful care package before her surgery that had lots of cool things for her to do during her stay at the hospital and goodies that she loved so much....My emotional well being during my daughters 2nd and 3rd and ICP bolt surgery was so much better than the first time around and that is all because of the wonderful ladies at CCB and all the other wonderful families i have met because of the network of support that is now there....
What a wonderful organization! We received a care package last summer when our son had his 2nd surgery. Not only do they send care packages to patients undergoing surgery, they are an amazing resource for information for the various cranio conditions and support!
Cranio Care Bears is by far the top resource moms like myself have for not just support for families with cranio kids but as a place to reach out and share experiences with other families. Before my daughter was diagnosed I had never heard of craniosyntosis. This organization was a life saver to me when I felt the most lost I had ever been in my lifetime. I can not imagine what I would of some without the wealth of information they provided and the love they share for all kids and families going thru this same process.
I don't even know where to begin on writing a review about how WONDERFUL CCB's is. I was born with craniosynostosis 25 years ago and my parents had no knowledge or support during such a tough time with surgery. One year ago I gave birth to a beautiful baby boy who was also diagnosed with cranio. I fortunately had CCB's to turn to for information, care, and support. While on the toughest journey of our lives, CCB's showed us that there are many more families facing the same troubles and that they would be there for us!
This charity gives hope to those who are effected by a condition that is at first scary, and hard to understand. They spread awareness, connect families with other resources, and offer emotional support. I am so grateful for the cranio care bears, and all that they do. Giving a parent hope over their child's condition has more value then words can ever express. It enabled me to for-see a a bright future for my son, when certain doctors even were unclear. Thank you!