ican conference 2011

We attended the International Children’s Anophthalmia/Micropthalmia Network (ican) conference this past weekend in Boston, MA.  This was Faith’s first time flying and she did an awesome job. We got very lucky and she slept on both flights!

We started off our time in Boston by participating in the multidisciplinary clinic at Tufts Floating Hospital for Children. We met with the genetics team, a physiatrist (physical medicine and rehabilitation doctor), and an oculoplastic surgeon. I am not going to go into all the details because it can be very overwhelming and would probably take me hours to write about. Instead, I will summarize. From a genetics standpoint, we already have a diagnosis(SOX2) for Faith so we are a step ahead of many families who are still searching for the cause of their child’s anophthalmia or microphthalmia (A/M). However, it was very helpful to us to talk with the geneticist about our concerns. Also, we were able to meet other families that have children with the SOX2 mutation which was very insightful.  From a physical medicine standpoint, there are many concerns about Faith’s gross and fine motor delays. We received many recommendations about bracing, equipment, etc. The oculoplastic surgeon had several recommendations which included considering hydrogel expanders as a way to speed up the process of expanding the orbits. We did learn from other families at the conference that many of the children with SOX2 have a much more difficult time with expansion, conformers, prosthetic eyes, etc. We have considered hydrogel expanders in the past but it most likely would require trips to Philadelphia which doesn’t seem to be in the cards right now for our family. Hydrogel expanders are also a newer approach to expanding the orbits which leaves us with many questions.  If anophthalmia was the only issue Faith was challenged with, our thoughts may be different. However, right now we are just trying to get Faith healthy. She is sick so often and constantly struggling with some type of infection or virus it seems.  For now, we are continuing with the conformer process to ensure that Faith’s face with grow as symmetrically as possible since she does not have eyes to stimulate growth. We will make other decisions about further treatment when the time comes.

We are so grateful for the opportunity and experience of attending the ican conference. This trip would not have been possible for our family without scholarships from the Missouri Deaf-Blind Project and Productive Living Board as well as help from the Manor New Tech Class of 2011,  friends, and family. Thank you so much!

For the weekend, we lived in a world where other people experience many of the same struggles and challenges that we face on a daily basis. Although all of our children share the common diagnosis of anopthalmia or microphthalmia, all of our children are very unique and all have various strengths and struggles. It was great to be able to talk and connect with other parents who are ahead of us in this journey to get insight and seek advice. Before the conference, I felt like I had a pretty good support group of parents with children with A/M but now that group has increased even more!  It was so great to meet in person several of the moms that I have met through online supports groups.

The conference was held at Perkins School for the Blind. This is where Helen Keller went to school. It was a beautiful campus! The conference topics included:

  • Oculoplastic Intervention in a Child with A/M
  • MACS-A support group in the UK
  • Genetic Research of A/M
  • Orientation and Mobility
  • Living with Microphthalmia-My Experience and Suggestions for Support and Information( guest speaker was born with microphthalmia)
  • Family Dynamics When a Child Has Special Needs
  • Research Frontiers-Hope or Hype?

ican and the genetics team at Albert Einstein Medical Center in Philadelphia have been a great support and resource for our family since we first found out that Faith’s eyes did not develop during my pregnancy. I could not imagine going through this journey without their help and support. It is disappointing that this outstanding organization is struggling to continue to do what it is doing due to financial constraints.  We are going to be brainstorming along with other families on how we can raise funds to ensure that  families will continue to get the help and support they need when faced with such as rare condition. Along with other families, we want to ensure that there will be another conference in 2013!!

Faith with "MACS", the monkey!

Mike and Faith outside the Howe Building at Perkins School for The Blind.