Wednesday, June 12, 2013

Sweet girl's tea party

Brennyn's birthday happens to fall on a National Holiday (Canada Day of course) so we often have to celebrate it with her friends a little earlier.

Went with a tea party theme this year, complete with candy, cupcakes and mini sandwiches.






Big sister Avery was the helper (tea parties really aren't her thing, lol).

Saturday, June 1, 2013

Ectodermal Dysplasia



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.