Dominic M. Aguilar Special Needs Trust

 
Raised: $43,787.00
Goal: $200,000.00
 
 
 

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Dominic Aguilar Trust

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On November 11, 2012, I gave birth to my only child, Dominic Michael Aguilar. My pregnancy was a "picture perfect" nine months. The nightmare did not begin until Dominic was born unabl... more

 
 
 
 
 
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Created by Dominic Aguilar Trust on October 15, 2013

On November 11, 2012, I gave birth to my only child, Dominic Michael Aguilar. My pregnancy was a "picture perfect" nine months. The nightmare did not begin until Dominic was born unable to suck or swallow. After four days in the Neonatal Intensive Care Unit, doctors informed us they suspected he may have a neurological problem due to his lack of swallowing, low tone, and unusual muscular movements. We reluctantly agreed to have him sedated for an MRI, and discovered that his brain did not migrate and form correctly during the first three months in utero. Dominic was ultimately diagnosed with a very rare brain abnormality called Bilateral Perisylvian Polymicrogyria. His initial prognosis was that he most likely would be tube fed his entire life, would probably not pass a kindergarten grade level mentally, would not talk or walk, would be visually blind or visually impaired, would most likely develop a seizure disorder by four months of age, and would have an overall developmental delay with regards to his neurological, cognitive, visual and feeding development.

Dominic is almost a year old, and has attended physical therapy, occupational therapy, infant stimulation therapy, and vision therapy five times a week both in-home and at Children's Hospital Orange County (CHOC) for the past year. During this time, he has been followed by several Neurologists, a Gastroenterologist, a Pulmonologist, an Ear Nose and Throat Specialist, a Geneticist, an Opthalmologist, and numerous therapists. To date, Dominic is entirely tube fed, has severe acid reflux, has been hospitalized twice for aspiration pneumonia, is severely visually impaired, developed uncontrollable seizures at 8 months, is on oxygen at night, nebulizer treatments during the day, and is highly developmentally delayed. He is on five different types of medication, does not have head or neck control, cannot sit or crawl, and has very little interaction with people and objects.

We have learned as a family to appreciate and cherish any and all of Dominic's accomplishments no matter how small. He continues to gain weight, has slowly started to track lit objects, recognizes our voices, has started to communicate with cooing sounds, has explored his mouth with his right hand, and has developed the most beautiful smile we have ever seen. I have been blessed with incredible co-workers who have donated many hours of leave allowing me to experience these achievements and care for my son as his primary caregiver. Unfortunately, my leave is about to expire. Dominic requires 24/7 skilled care along with transportation to and from doctor and therapy visits in order to safely progress. We ask for any monetary donations to help lessen the burden on our family so I can return to work with a piece of mind knowing he is in good hands. Without skilled nursing care, I am unable to return to work.

He is our angel, however, our angel requires constant professional supervision, and therapy. Please keep him in your prayers as we pray for a better outcome than what is medically predicted for him.

We would like to thank all of our family, friends and co-workers who have supported us during this most difficult time. We appreciate and love you. The Aguilar Family


Surgery For Feeding Tube Placement in NICU at 2 Months Old


One of Many EEG's Conducted to Monitor Seizure Activity


EKG Conducted During a Hospitalization Due to Low Heart Rate


His First Smile at Nine Months Old


Sent Home on Oxygen Due to Several Pneumonias



Finially Baptized on October 12, 2013
 
 
 
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I have an eight year old son with Lennox Gastaut Syndrome. We have been through a lot of what you have described. It hasn't been easy but he has been worth every second! I wish you the best and know that Dominic is here for a reason. God bless. Mark Williams

posted by Buc Williams 5 months ago

Beautiful Dominic, you are in my prayers everyday and I hope for strength, progress and health everyday of your precious life! God Bless you sweet boy!

posted by Erin Coley 5 months ago

It messed up my comment! I just wanted to say that we have been on our knees praying from the start and you're always on our hearts. We are here for you ANYtime for ANYthing! Please let me know! We will continue to help support financially and spiritually, but I'd love to be there as well. I'm here...We love you XXOO

posted by Sarah Rodriguez 6 months ago

Melanie, Steve, and Sweet baby Dom

posted by Sarah Rodriguez 6 months ago

1 - 4 of 4 Comments
 

Recent Donations (273)

$43,787 raised by 273 people in 6 months.

$100.00

Sharon LoPresti

13 days ago

 
 

Glad we can help in some way. Your family is in our thoughts and prayers. Sincerely,Jim and Sharon (Cathy,s sister)

 

$100.00

Danielle Raymond

18 days ago

 
 

Lots of love - Brian and Danielle Raymond

 

$15.00

Anonymous

25 days ago (Monthly Donation)

 

$50.00

Stephen Sollitto

25 days ago (Monthly Donation)

 
 

$100.00

Claudine covolo

27 days ago

 
 

Many blessing to you and your family. Our children are the greatest gift. xx

 

$100.00

Samantha Schwarz

28 days ago

 
 

Wanted to make a donation. I'm a friend of Natalie Weinstein

 

$300.00

Berks FOP Lodge 71

29 days ago

 
 

Our thoughts and prayers to you and your family...

 

$20.00

Bernie Smith

1 month ago

 
 

$750.00

KML (GM&M) Law Group

1 month ago

 
 

Melanie, Steven and Dominic, much love, light and hope to you from your friends at KML Law Group (GM&M).

 

$100.00

Steph and Bryan Rhody

1 month ago

 
 

1-10 of 273 donations

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