I've been a member of this group for about 4yrs now. I joined shortly after I found out about my daughter's cleft through a routine u/s. She is almost 4 now. Everyone is so friendly and helpful. They helped ease my mind many times from pregnancy until now. We've been through 4 surgeries this far. I love the advice I get and shoulders to vent on and being able to share little milestones that only others in our situation understands. I couldn't be happier having stumbled upon this group.
This is one, if not the most amazing organizations I've ever encoutered! They are unbelievably so kind and helpful! I'm the mother of a five year old son born with a severe cleft lip and palate. I get so much comfort and help here, they're absolutely amazing. I thank them hundreds of times over! And thanks again! You guys are the best!!!
I cannot say it enough of how much the constant advice, encouragement and support that I have received through this foundation. It is truly something that helps. When I can also help support other families a long the way, well, there's just nothing that can compare to being there for someone who just wants to know someone knows their journey. It is just amazing.
As a mother of three and my youngest born with a cleft palate and other conditions, I have found the Cleft Lip and Palate Foundation of Smiles a orgainzation that "real" people, a family cares so much for each person that wants some support. Just to know that there is always someone that can truly relate to things you feel or face on a daily basis. The emotional support is beyond amazing. I became involved with the Foundation a a while back and I am so thankful everyday to have such an amazing support system that truly cares about me, my well being as well as my family.
My son was born with a clcp I wish i wld have know of the group when I was pregnant. When i found out by an u/s I was devistated and didn't knoe what to think.. during his first cleft appt I met a wonderful person who led me to this group and changed my life forever! This group is amazing and has help so many and changed the lives of lots of families too!! So glad to have my cleft family live them all
At some point in life, it is hard to tell where the journey being traveled is going to lead. The mountains get really high and extremely difficult to climb, in our journey my son's condition is the mountain and all the added obstacles associated with this condition is the different altitudes. He was born with Stickler Syndrome, being born with a cleft palate is one of the struggles.(Among other things...this condition affects everything in the body with collagen in it.) One thing that isn't ever explained to you in great detail is how important it is to find people who you can relate to. People who understand your struggles with one little thought shared. This is where the Cleft Lip and Palate Foundation of Smiles comes in. They are those people, every single one of them. Their ability to reach out and draw you in with love and support astounds me. I wish that we would have found them sooner in life. My son is only 5 years old, but it feels as if we've gone through so much more in those short 5 years than most people do in 20. The unconditional love & support received from my cleft family is amazing. Even now, 3 years after his palate repair. Any question I have, any question someone else has. We learn together, love together and overcome our mountains together. The drive Rachel (Milinda & so many others) has for this organization is amazing. Many great things will be accomplished here. I am glad to be a part of it, too. I cannot thank them enough.
I have never been so thrilled to be involved with an organization that cares greatly about the children and their families as The Cleft Lip and Palate Foundation of Smiles does. I tell everyone about this organization. I have learned so much through the forum, their Facebook group and through their website that I otherwise wouldn't have known. My son is thriving due to the enormous amount of help the organization and it's family of members share. I don't know where Zachary and I would be today without the help and support. It is vital to the well-being of our babies. They are the best there is out there. Period.
This group is by far the best community of parents I have met that are educated about Cleft Lip and Cleft Palate. BUT, not only are they educated, there is a feeling of community - a true sense of love and compassion that you feel not only with the executives but the community as a whole. I found this group when I was pregnant with my first. It was a great place for me to express my feelings and ask questions to others that I didn't necessarily want my family or friends to know about. Sometimes it is tough to talk about what it feels like to know your children will be born differently. This group allows you to open up and openly discuss with others. They are totally accepting. It's a great group to be a part of!
My son was born with a bi-lateral cleft lip and palate and my wife and I were at a loss in regards to what should we do and how this can happen. Through the foundation, we have received the support and education that is just what the doctor ordered. The foundation is fantastic!!!
I am so glad to be able to serve on the Board of the great foundation. They have done so much for so many families.
This is such a great organization. They help so many families with Cleft. I am so happy that I have become involved with the Cleft Lip & Palate Foundation of Smiles and the many programs that they offer.
We have found the information and services provided by Cleft Lip and Palate Foundation of Smiles has been highly useful. We appreciate their continued support that they provide to families dealing with cleft lip and palate.
Back in 2010, during a routine ultrasound, I was informed the newest addition to our family would be born with a cleft lip and possibly a cleft palate. I was terrified and felt so isolated. I found the foundation in an online search and joined their facebook page. They had not only a WONDERFUL webpage with all the resources and information, but programs like Weimer Bottle program who help moms get special needs nipples and bottles if we need them and can no afford them. With all that said, the GREATEST part of this foundation is their actual support network. The administrators are personally active and outright offer support as well as hundreds of other cleft parents. I have never gone more than 15 minutes without a response to a question or concern. Also, the support I have gotten from the group was the biggest factor in me staying calm through my son's surgeries. This group is truly amazing and definately one of a kind!
Invaluable support and information can be found here with this organization. Having a child with a birth defect can be a stressful, sometimes isolating experience. The the support staff make members feel validated, supported and not so alone. I wish I had had them when I first learned of my son's condition while pregnant (don't think they were around yet).
As a grandmother raising a grandchild with a cleft lip and palate I can honestly say that this foundation is amazing! Parents to parents reaching out to offer support, encouragement and eduction. I enjoy meeting other parents but finding a cleft adult who can share their childhood experiences is invaluable. And meeting teenagers with clefts who are willing to speak honestly about their lives. We have the title of non-profit because all the money donated goes to support our families. But in my heart it is definitely not a non-profit because I am blessed everyday by the families I meet. Please consider donating to the foundation so we can continue to provide for our families through the programs we have available.
This Foundation is a blessing for all who are members of it. I was born with a cleft lip back in 1970 and my parents had no real means of support back then. I only wish that they had had something even remotely close to this Foundation back then for support and education for me and my family. This Foundation provides the education and the knowledge, but most importantly it provides much-needed support. I can't say enough good things about them. I have come to think of this organization as not just friends, but as family.
When you are given (or not) the diagnosis of cleft lip and palate, what are you supposed to do, so many questions, etc. Thankfully the Cleft Lip and Palate Foundation of Smiles is there to help. There are so many families affected with some sort of craniofacial issue. You can ask a strange question and you'll get a response of someone having gone through that issue or having the same issue as you. I can't thank them enough for doing such a great job!