Confetti Skin is a blog run by Jennifer and Rachel and focuses on ichthyosis in general. All of their children and Rachel herself are affected by other forms of ichthyosis - less severe and more common than Harlequin. On their blog, they cover a variety of topics about ichthyosis and are wonderful about explaining about the different forms of the condition from a scientific standpoint.
One of the ongoing projects they have undertaken is to host guest posts from those affected by the different kinds of ichthyosis. The first kind they are featuring is Harlequin, and they started with a post about the condition itself.
The first guest series they ran was from Alicia, who has a 6-month son Efrain with Harlequin. I was so interested to read Alicia's account of Efrain's birth and to hear about the similarities and differences in our birth experiences. At the community hospital where Efrain was born, almost all of Alicia's doctors and specialists told her immediately that Efrain was going to die. What a contrast from Brenna's birth, where our doctors were extremely positive and supportive. It was almost the opposite for me, in that I didn't even think Brenna's condition was as severe as it is until a day or two after she was born. You can read Alicia's series here, here and here.
I am really looking forward to reading future posts from more families, especially the ones written by those in their teens and 20s! It gives me so much hope to hear about older children with Harlequin who are healthy and successful.
In my guest post, I discuss Brenna's first year...
"When Brenna was first born, each day felt like its own year. The hours dragged and the days dragged as we watched her fight to stay alive, to grow little by little, to get rid of her painfully restrictive original skin. Each new day was cause for a celebration during those early days where we were just trying to keep moving forward.
Upon talking with other families whose children have Harlequin ichthyosis, they all said the same thing “stay strong; it gets easier.”
And now, with Brenna nearing one year of age, I feel so proud and so relieved to say those same reassuring words to other families. Because she has struggled, she has survived and she has battled many hardships for me to now be able to say those words.
The first year of a child’s life is often the hardest – many sleepless nights and complete dependence on you to provide for your child’s every need. With a severe skin condition that can cause a host of complications, the difficulty of that first year takes on a whole new meaning…the grief of the unknown at birth, the emotional rollercoaster ride of the NICU, the hours spent dedicated to skin care and warding off infection."Read the rest of the post over at Confetti Skin!