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Deafblind Awareness Week – Lacey’s Story

Lacey’s story began when she was born in California on July 9, 1998 with multiple birth defects- severe bilateral cleft lip and palate, TEF and TA. She had a g-tube surgery on day one and her TEF and TA was repaired at one week old. She had choroid retinal optic nerve coloboma in her left eye and her right eye had coloboma, micropthalmia and no vision in that eye. She had bilateral hearing loss- right ear severe and left moderate, but her hearing has regressed over the years and now she has profound loss in both ears. Lacey has deafblindness.

Lacey was diagnosed with CHARGE syndrome at 3 weeks and that’s when her birth family decided to give her up for adoption and she was placed in a rehabilitation facility for children-Health Bridge . I learned about Lacey and was chose to be her mom and what a blessing.

I went to California when Lacey was 10 weeks old, spent four days with her learning her care, and fell in love with her. I was told she cried a lot but now she was at peace because she had her mom and did not cry with me. I brought her home to New Hampshire.

I found out about the CHARGE Syndrome Foundation before i decided to adopt Lacey and I talked with Marion Norbury. She told me all about CHARGE and she was very supportive.

I was told by Lacey’s birth father that they were told Lacey would live to only age 2 because her heart was so bad. Lacey is now 25. It hasn’t always been an easy journey, but we have also had lots of joy and happiness!

Lacey is truly a blessing to our family. Lacey has had numerous medical challenges, including severe Cyclic vomiting syndrome, abdominal migraines, over 30 aspiration pneumonias, frequent urinary tract infections, GI issues, numerous hospitalizations and surgeries. She uses a wheelchair as she can’t walk independently She also has a seizure disorder, and was diagnosed with POTS a few years ago. She had a VNS implant to help with POTS and her seizures. Lacey is so strong, resilient and a fighter! She has a sense of humor and has the best laugh. She has an amazing life!

We love to travel and Lacey has gone on cruises, been to Europe, went up to the acropolis in Athens and had a bumpy ride in her wheelchair but had fun! She went on a cruise to Alaska and saw whales and glaciers. One of our favorite places is Disney World and Lacey loves the fast rides. Lacey loves the water and enjoys swimming in our pool. Lacey enjoys numerous recreational activities. She participates in adaptive sit skiing, adaptive kayaking, horseback riding therapy, and music therapy.

Lacey is nonverbal but she can communicate in her own way. She has said some words like “On” and “Mama” . She does not sign, even though we have tried. She has had numerous interventions and therapies. She has an IPAD and loves You Tube and uses Touch CHAT and recently has been really doing awesome letting us know what she wants or how she is feeling. For example she said “I feel sick” using Touchchat and then hit the icon nurse. This is huge as she connected being sick with the nurse. She loves a certain comfy sweater and wants to wear the same one all the time and will reach out for it . She won’t leave her bedroom until she puts it on. Lacey is amazing!

What would you like to tell other people about deafblindness?

People living with deafblindess are like anyone else and can achieve so many things and enjoy life. Put no limits on what they can do! Deafblindness and CHARGE syndrome do not stop Lacey!