A few words from mom and dad:

Our daughter, Gracie, is a happy, smiley, and very special 4-year-old little girl. At 6 months old, doctors found a large irremovable mass encompassing both sides of her brain. We found that her motor cortex is extremely damaged, almost non-existent, and the brain matter that was not damaged will allow her only infant-like responses and behaviors. The specific diagnosis is porencephaly, which can be described as a form of cerebral palsy. We have learned this is all a result of TTTS, or twin to twin transfusion syndrome. Gracie was an identical twin up until 6 months gestation and during that time had been sharing blood supply, oxygen, nutrients and fluid with her twin sister making them high risk, weak and vulnerable. Because of our TTTS, we were being closely monitored through weekly ultrasounds and on one of these visits were told one of the girls no longer had a heartbeat. We believe she gave in so that her sister could go on, hence her name Eva "giver of life". At the time of our loss, we were informed that it was possible damage could have occured to our surviving twin. However, termination was not an option for us. We held on to the hope that one of our girls would make it and be healthy. Obviously, learning that Gracie had been effected by her sisters loss was, and continues to be, one of the biggest challenges of our lives; emotionally, physically and financially.

We are hopeful and encouraged by Gracie’s continued progress. She is obviously limited, but tries so hard in her therapies and at school and we have seen some improvement, albeit small. She does not have speech and her inability to move her limbs due to her severe muscle tone and involvement makes communicating very difficult. Thus, she struggles with negative behavior through incessant screaming, yelling and even by pulling out her own hair. We are striving towards finding a way to communicate together through behavioral and communicative therapies. She also enjoys her physical and occupational therapy 2 times per week. She is now able to lift her right hand to her mouth and play with a toy if put into her hand. She has shown some gains in assisted sitting balance and has done some work in a gait trainer. She struggles with feeding because of her drooling and tongue-thrusting, but has learned to drink from a sippy cup and is now able to eat pureed foods. Medically, Gracie will need surgeries to alleviate pain and discomfort and allow for proper growth due to her increased tone. We had our first surgery on her hips last spring. It was a trying time for her and for us because she does not understand that the pain will get better and that we are only trying to help her. This will be a continuous struggle throughout our lives.

Gracie also has an ongoing need for medical equipment specific to her condition. Through therapy resources and insurance she has received a feeder chair, a stander, a wheelchair and a bath chair. However, neither therapy nor health insurance pays for a wheelchair accessible vehicle. We have been learning all about these vehicles and have found that they range from $50,000 to $70,000, which to any family is crippling. We have researched grants and various other resources, but, unfortunately due to the bad economy, these have either been placed on hold indefinitely or become extinct. However, we are in dire need of this vehicle. We see various doctors sometimes up to 3 times per month, clinics up to 4 times a year, will inevitably face more surgeries and rehab, and need her medications, special food and diapers not to mention therapy, school and just regular day-to-day life. Right now we have to transport her in a car seat with the wheelchair tied down with bungee cords. This mode of travel is not safe. A typical car seat does not accommodate Gracie properly and we would like to see her traveling in her wheelchair where she is correctly supported and stabilized. We hope that with help from family, friends, and acquaintances this huge burden will be lightened and we can greatly impact Gracie’s quality of life.

We feel we have been blessed with Gracie's continued progress, as well as three sons who have a special and unique bond with their sister. We are fortunate to be able to share in this one-of-a-kind experience of unconditional love and it is one we cherish. We hope Gracie's kind spirit and smiling face will, in some small way, touch others like it has us. We so appreciate your support and acknowledgement. Thank you.

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Grace Grant

Mail to:
US BANK
San Clemente Office
LM-CA-7211
1051 Avenida Pico
San Clemente, CA 92673