After a normal pregnancy, we noticed that something was out of the ordinary the moment Charlie was born. He was initially diagnosed with microcephaly, and after many tests he was diagnosed with Joubert Syndrome- a molar tooth brain malformation which affects vision, motor skills and results in low muscle tone.

He’s getting stronger every day and just as crazy as any other toddler, but we could not have done it without our amazing team at EI. We still have our battles to face but we are very optimistic about the journey we are on! Thank you to you and your donors for helping us along the way!

At my 20 week scan we found out that Henry’s brain was not developing properly. At one month old he was diagnosed with Foxg1 syndrome. He has a trach, uses a ventilator overnight, has a g-tube and has suffered from seizures since birth. Henry spends a lot of his time with EI. He is a strong little guy who has made tremendous improvements and we are so proud of him every single day. We wanted to thank you and your donors for our CJ Fund grant. We’ve used this to help pay for his physical therapy; when he was born the doctors told us he wouldn’t walk, but with intensive PT we are all determined to prove them wrong!

Hazel has a very rare genetic disorder, CVI and epilepsy. She’s working hard every day on being more independent and the CJ Fund grant was used to buy a special tomato chair (pictured). She loves it for lounging, eating and playing.

Adaptive equipment that is needed to make kids comfortable and help them thrive can be so costly or very difficult to acquire through insurance. We thank you and your generous donors for providing another way. It is so appreciated in a tough time of need. Hazel is doing really well and has started school. She is continuing with many therapies and progressing every day.

Delaney has two rare genetic syndromes, causing global developmental issues, and complex medical needs. Delaney is non-verbal and EI has been a lifeline for our family. With their help Delaney has made great strides working with Augmentative and Alternative Communication, or AAC.

We received a CJ Fund grant to purchase a TouchChat WordPower AAC program for Delaney’s speech generating device. I can’t emphasize enough the importance of having access to this AAC program. With it Delaney has her own “voice” and uses it to communicate, build relationships, and meaningfully participate in family & friend life. THANK YOU!