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.
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.
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).