Our sweet daughter, Clover Jane, was born with a rare genetic condition called Prader Willi Syndrome (PWS). PWS occurs in 1 out of every 15,000 births and is due to an abnormality on chromosome 15.
When Clover was born, she was very "floppy"....she was like a rag doll. PWS causes infants to have very low muscle tone. This can make even simple tasks like eating and breathing difficult. Clover has a g-tube to help her eat and requires oxygen to help her breathe. Her first 2 months of life she was on oxygen 24 hours a day, but now only requires oxygen during the night.
As Clover gets older, she will develop an insatiable appetite....meaning she will always have a feeling of extreme hunger. She will never feel "full" (even after eating a large meal).
PWS is a life-long, life threatening disorder. There is currently no cure! But our family has hope and we pray every day that a cure will soon be found. Researchers are making great strides and with continued funding, they can continue to look for a cure and end the hunger for these darling children. We will never lose hope!
Clover amazes us every single day. She is smart, happy and is getting stronger and reaching new milestones each day. She receives physical, occupational and speech therapy once a week and has a team of doctors helping her and cheering her on in her journey. We couldn't be more proud of her. She is the light of our lives and every second we are thankful to have her in our family.
If you would like to make a donation to fund PWS research, click here. Every penny raised goes to fund research that may help Clover and others with PWS live a “fuller” life. Every little bit helps! Thank you!
