My youngest daughter has a very rare genetic syndrome. There is no cure, not much research being done (on her form of it). There are over 150 known forms of ectodermal dysplasia, Brennyn has something called ADULT (Acro-Dermato-Ungual-Lacrimal-Tooth) syndrome. She was born with cleft hand, syndactyly, tooth issues (although she is very fortunate to have a complete set of baby teeth, many people with ectodermal dysplasia need implants), eczema, etc. Her condition is far from life threatening, it's more of a nuisance for her (for lack of a better word). She will miss many days of school for specialist appointments over the years, we go to Sick Kids at least 8 times a year. She needs eye drops, skin cream and nose spray applied twice a day.
Yet, she is the most caring, sweetest child I have ever met. She is more concerned for the other kids we see at the hospital. She loves Sick Kids, she loves the doctors (for the most part).
My daughter is so brave, she has taught us so much. I can honestly say she has made me a better person, she has taught us so much.
We think we are teaching our children, yet they are the ones teaching us. Our youngest also taught us about courage and bravery this past week... And I believe, like yourself, it has made me a better person.
ReplyDeleteYou are such a special girl B.
Hi there, I came across your blog and saw your adorable daughter. I'm adopting a 6 year old little girl from China with Ectodermal Dysplasia. There can't be that many, so I thought I'd send you a message. My daughter is from Wuxi, Jiangsu.
ReplyDeleteHi Darlene,
ReplyDeleteThere isn't that many kids with Ectodermal Dysplasia adopted from China that I'm aware of. I do know of one other in Canada. Congratulations on your new daughter!!