For those of you who follow us on Facebook you know we are offering a free portrait session this month for a special family. We were inspired by a mom , Melanie , who wrote to us asking if we could shoot her wedding . She told us that she had a very special request. She wanted a great picture of her son , Aidan, an 8 year old twin, who is severely disabled and in a wheelchair. She told me she didn’t know how long Aidan would be with them . He has already outlived his doctors predictions, yay Aidan! She loves pictures but every photo session with Aidan turned into tears (hers) because Aidan couldn’t be captured, or the photographer got frustrated. Unfortunately, we were not available for her wedding . However, as the mother of a 9 year old boy myself my heart broke when I read her story. I told Melanie that Tyler and I would love to shoot the family for free & see what we could do.
At 31 weeks gestation, Aidan was born one hour after his twin sister and with considerable difficulty. He had been deprived of oxygen and was blue at birth. Though both children stayed in the NICU only his sister seemed to flourish. Both had physical therapy and Aidan progress took a little longer. At nine months Aidan had what his physical therapist thought was a seizure. He was taken to Children’s Hospital of Philadelphia, given an EEG (electroencephalogram) & his parents were told the devastating news that Aidan had something called Infantile Spasms.
Though Aidan and his family’s journey has been a long one, there are silver linings. Melanie is now remarrying Ben, who has two young children. Everyone has had to learn about people with disabilities, how it affects their family. Most importantly, how much they are loved. At first, Ben’s children were somewhat scared & shy but now they love to hug Aidan and make silly noises to make him laugh. Blending this family has taken some adjusting and learning on everyone’s part. Melanie has shared with us how Aidan has taught so many people so very much without saying a word.
To learn more about Infant Spasms or to donate to the cause you can go to www.infantilespasmsinfo.org . Melanie also said she is so grateful for all of the support and strength she got from Children’s Hospital of Philadelphia (http://www.chop.edu ) and St. Edmunds Home (Click here).
Thank you Melanie, Aidan, Ben & crew for your heartwarming story & allowing us a window into your family & life.
PS. I also was very moved to see Aidan’s journey captured by his mom through the early years. To watch his video click this link ( See Aidan Matthew’s Journey online ).
***If you know of a deserving family please write me: firstname.lastname@example.org. Please put in the subject line “photo give away”. We are looking for our next family. Stories will be selected on 6/14/13***