Angela and her husband were excitedly preparing for the birth of their daughter, Maeve. Following a typical pregnancy, Maeve came into the world with a surprise diagnosis of epidermolysis bullosa (EB). From that moment, Angela was told that she would be Maeve’s expert when it came to caring for her condition. This meant a rigorous skincare regimen involving daily wound care while tending to the blisters on Maeve’s hands and feet caused by EB.
Fear about the future set in quickly. There was a possibility that Maeve would have delayed motor skills due to the blistering on her hands and feet. Angela was afraid to be close to Maeve; her skin was so delicate that even the slightest irritation from the tag on a shirt could cause painful blisters. Daily wound care was the hardest part of their routine. “It’s all about trial and error to find out what works for her skin. EB affects everyone differently. The best example I could give her is to just keep trying.” Maeve’s brother was still too young to understand what was happening and was becoming increasingly distressed as she would frequently cry out in pain. Stress was building for the whole family and Angela knew she needed support. That’s when she found HopeSparks.
Angela was relieved to find out that the early intervention program with HopeSparks was home-based. That meant she wouldn’t have to worry about putting Maeve in her car seat for weekly physical therapy appointments, causing more blistering on her neck from the car seat harness. As Maeve started making progress toward age-typical motor skills with the physical therapist, they also started working with an Infant Mental Health Therapist to address the emotional toll that EB was taking on the family.
With the support of HopeSparks, Maeve is making more progress than ever. As her motor skills increase, so does her confidence in interacting with other children her age. On therapy days, Maeve watches excitedly out the window for her friends from HopeSparks to pull up in the driveway, ready to play. Infant Mental Health therapy has built on the family’s strengths and helped them live with EB. “Without HopeSparks, I wouldn’t be confident in being Maeve’s mother.”