We are holding a fundraising coffee morning to raise funds for sensory equipment for our daughter Eva.
Eva has Cornelia de Lange Syndrome (CdLS) and Holoprosencephaly.
Cornelia de Lange Syndrome (CdLS) is a rare genetic disorder affecting between one in 40,000 and one in 100,000 live births. At the moment it is not known what causes the condition. People affected with CdLS have multiple disabilities.
Holoprosencephaly (HPE) also is a rare condition affecting the brain. Again, the cause is not yet known. It is estimated that HPE affects between 1 in 5,000-10,000 live births. Current studies indicate that only 3% of all fetuses with HPE survive to delivery and the vast majority of these infants do not survive past the first six months of life.
So all in all, our princess Eva is a real unique little gem. We are so blessed to have her in our lives and to be entrusted with her life. We thank God daily for Eli and Eva, true gifts from God.
As Eva faces many struggles in day to day life, we want to try and make life as happy and enjoyable for her as possible. We would love transform her bedroom into a Sensory Room where she can enjoy play, lights, relaxation and rest.
Sensory equipment comes in at a very high cost so we are hoping to raise some funds to help us along the way with this.
We will keep you updated closer to the event.
Thank you and look forward to seeing you there for a cuppa.
Paul and Michelle Jenkins
Psalm 139 v 13-14
You made all the delicate, inner parts of my body and knit me together in my mother’s womb.
Thank you for making me so wonderfully complex! Your workmanship is marvelous—how well I know it.