Ongoing medical needs for Crew

Hi, my name is Marie and I am raising money for my 22 month old grandson, Crew.

Crew Michael was born on 12/3/21 at 31 weeks and 2 days. He weighed 2 lbs and 9 oz. Miraculously he held on with very little amniotic fluid, but came out crying and fighting.

Then on January 10, 2022 a routine follow up head ultrasound that no one was worried about, showed Periventricular Leukomalacia. Cysts that grew in place of damaged brain cells due to lack of oxygen at some point in utero.

The doctor talked about risks of developmental delays due to prematurity, and then how this causes an even bigger increase of risk. 75% of kids with PVL go on to have some sort of disability. Cerebral Palsy being a main one.

Crew was formally diagnosed with Cerebral Palsy shortly after his first birthday.

Crew’s type of CP is Mixed Quadriplegia which means he has fluctuating high/low tone throughout his whole body. He also has some dystonia which is involuntary twisting which we notice mostly in his arms.

People with CP may need to see many specialists who play a pivotal role in their health and care. In addition to his pediatrician, Crew sees a neurologist, ophthalmologist, PMR, ENT, audiologist, and even saw a hematologist. That’s a lot of “ists” on one team! We are endlessly thankful to live so close to Chicago where Crew can be seen by some of the top doctors in the nation at Ann & Robert H. Lurie Children's Hospital

In less than two years Crew has had an EEG, a sedated MRII, swallow study, sleep

Study and a sedated scope due to Apnea, that led to the removal of tonsils and adenoids.

Crew has weekly speech, bi weekly OT and bi weekly physical therapy. Thankful to early childhood intervention until he is 3 yrs old, one therapy per specialty is covered each week. Extra therapy he desperately needs is covered by my daughter’s insurance with required co pays. If money were no object Crew would benefit from extra therapy sessions each week.

Some equipment is covered by EI and so many things are not, the great majority are not. The current wish is securing a spot at an intensive therapy center.

These therapy centers are very expensive, not covered by insurance but have proven successful in creating new neuro pathways. Dynamic Movement Intervention in particular, popularly known as DMI is a therapeutic technique used by physical therapists to treat children with motor delay. It works by improving automatic postural responses and promoting progress toward developmental milestones.

You don’t realize until disability is the life you are living how expensive disability equipment and proven therapies are.

The present and future is an unknown. We are determined as a family to give Crew as much as we can to help him reach his potential whatever that may be.

We do know he will more than likely be wheelchair dependent and that will require ramps, home modifications and a wheelchair accessible van that will be a significant financial burden.

I have started this go fund me to help Crew reach his fullest potential and ease the burden and worry for my daughter and her family.,