DiGeorge Syndrome

As many of you know, Angelina has been through 2 open heart surgeries. What some of you may not know is that she has DiGeorge Syndrome, also known as Velo-cardio-facial syndrome (VCFS). VCFS has had as many as 180 anomalies reported. Common possible characteristics of this syndrome include heart problems, immunity problems, feeding problems, delay in achieving developmental milestones, delay in speech and language development, learning difficulties, kidney abnormalities, and psychological or psychiatric problems. These are only a few of the problems! Just this list alone is overwhelming to me.

It has taken me a year to be more comfortable researching Angelina’s syndrome. It breaks my heart every time I do! Then I look at her and realize how amazing she is! Not only has she had heart surgeries but she also has a feeding tube through her tummy that we must feed her through, she goes to physical and occupational therapy, she takes several medications and sees her doctors frequently.

Thankfully there is the VCFS Educational Foundation. It is through this foundation I have found inspiration; I have learned more about the syndrome and about how to care for our baby girl. I recently discovered this Foundation is having a conference, their 15th Annual Scientific Meeting. It is geared towards parents, clinicians and of course scientists. At the conference they will share “the latest updates in VCFS, therapies, education, and current research....there will be a chance to have lunch with the experts and one on one time with many professionals, through the individual consultations.” Can I tell you this makes me so excited?!! It’s from July 18-20th...in Troy, Michigan. Caring for our three kids; Marcelina 6, Alex 3, and Angelina when both parents work is already a challenge in itself. Having to come up with $3000 for Angelina and us, her parents, to attend this conference is an even greater feat. Unfortunately there is no extra money in the household budget to pay for this very important trip.

In order to find a way to make the journey, we are planning several fundraisers. We will keep you posted on these and hope you can join us! If you can help us with donations, you can also do it through the DONATE link on this website. The conference is just around the corner; please help us make it there! We thank you in advance for your help!