HELP Declan get an Adaptive Bike!

This is 8-year old Declan! A sweet and loving little boy, my little buddy and friend! The picture above shows Declan riding an adaptive bike for the first time! When Declan was introduced to the Freedom Concepts adaptive bike at physical therapy, it was evident that he loved it. He loves being outside. It was the most amazing and tearful moment when he looked over and realized he was the one biking outside! From that moment I knew I had to do something to help this kid get the bike and make his wish come true! And I need everyone's HELP to make Declan's wish come true!! 

Declan's story:

Declan was born in 2010 at 24 weeks and 4 days, weighing only 1 lb, 14 oz.  Due to Declan’s extreme prematurity, he has had to endure and overcome numerous life-threatening conditions and spent six months in the Neonatal Intensive Care Unit (“NICU”) before he finally came home.  One of the most critical conditions Declan faced at birth was an intraventricular hemorrhage (“IVH”), or bleeding on his brain.  As a result of the IVH, Declan developed Hydrocephalus, or "fluid on the brain".  In an effort to remove and control the flow of excess cerebral spinal fluid (“CSF”), Declan underwent a series of spinal taps. While the spinal taps provided some relief, they were unsuccessful in relieving the amount of CSF collecting in his brain.  Still hoping to avoid the placement of a shunt (which is a medical procedure that drains excess fluid from the brain) and the lifelong complications that can accompany such a procedure, Declan underwent his first brain surgery for the placement of an “Ommaya Reservoir” (that is a plastic device that's implanted under your scalp, used to deliver medication to your cerebrospinal fluid (CSF)).  CSF was withdrawn from the reservoir in the hopes that enough would be removed, the impetus for the blockage would resolve and Declan’s body would be able to drain the fluid.  Unfortunately, Declan’s little body was not able to continuously drain the CSF on his own and the placement of a shunt became necessary.

In December 2010, Declan underwent his second brain surgery for the placement of a VP shunt - Ventriculoperitoneal shunting is a surgery to treat excess cerebrospinal fluid (CSF) in the cavities (ventricles) of the brain (hydrocephalus).  The VP shunt is programmable by a magnet and allowed Declan’s Neurosurgeon to adjust the level at which the CSF is drained.

In April of 2011, Declan was diagnosed with a severe to profound hearing loss.  The loss of his hearing was most likely attributed to the many rounds of antibiotics which were administered to him throughout his time in the NICU in order to save his life.  Eventually, Declan was found to be a cochlear implant candidate (a surgical and small, complex electronic device that can help to provide a sense of sound to a person who is profoundly deaf or severely hard-of-hearing).  It was determined, however, that Declan could not receive a cochlear implant with his VP shunt in place due to the effect of the cochlear implant magnets on his VP shunt settings.  So, in December of 2011, Declan underwent his THIRD BRAIN SURGERY to replace his VP shunt with a non-programmable shunt and, in January of 2012, Declan was able to receive his cochlear implant.  
As is common for children with shunts, Declan has experienced numerous shunt malfunctions which require emergency brain surgery.  This, unfortunately, is a lifelong reality for individuals with shunts.
Additionally, due to the bleeding on his brain,  Declan developed Cerebral Palsy, commonly referred to as "CP".  CP affects normal movement in different parts of the body such as gait, muscle tone, and coordination of movements.  

In his short life, Declan has undergone close to 20 surgeries, including a double hernia, Gtube/Nissen (gastrostomy tube placed in the stomach to allow for feeding), Ommaya Reservoir, Shunt, Strabismus, Myringotomy (a surgical procedure in which your doctor creates a small hole in the eardrum so fluids such as water, blood, or pus can drain out..), Shunt replacement, Cochlear Implant, and multiple shunt revisions.

Declan’s physical and cognitive development is uncertain and he faces a host of challenges.  As is common with children with Hydrocephalus, Declan developed swallowing problems and is now 100% reliant on a Gtube to receive nutrition.  Declan has been through things that no child should ever have to experience.  He has had to overcome numerous life-threatening situations and, making it through those, now fights for his development.  
Despite it all, Declan is a sweet and loving little boy who loves to hold hands, be outside, watch Mickey Mouse Clubhouse and snuggle.  Recently, in his physical therapy treatment, Declan was introduced to an adaptive bicycle and LOVED it. 

However, unlike regular bikes that children have, adaptive bikes for special needs children are expensive! Each bike is built to the person and their special needs, taking leg length, trunk support, and the type of disability into consideration.  Learning to whistle, tying shoelaces, or turning a somersault are all childhood milestones every boy or girl wants to grasp because everyone else can do it. Learning to bike ride is one such rite of passage, but for those with special needs such as Declan—have a unique set of challenges to overcome like limited mobility, sensory difficulties, or communication/social deficiencies—the opportunity may not always present itself.  Bikes strengthen kids with special needs physically. The exertion of the pedaling allows them to develop the leg muscle organization, endurance, fine-tune motor skills and physical coordination as well as aid with balance. Learning to ride a bike grows special needs kids mentally. As everyone experiencing the struggle knows, it takes focus to stay upright as he or she masters the task. Grasping the skill to bike ride also requires determination to carry through to the end. This adaptive bike will help reinforce Declan emotionally!  It brings a sense of independence that he gains as well as the accompanying feelings of freedom, pride, and accomplishment! Being able to ride this bike every day, Declan can have the opportunity to work hard to learn new things and have the confidence to succeed in other aspects of life. Learning to ride the adaptive bike Declan can develop his social skills since it’s an activity the whole family can participate in.

Unfortunately, Declan's health insurance plan does not provide the funding for what is needed for his continued progress. As a solution, I have set up a fundraising campaign to Crowdrise in an effort to allow Declan the chance to have and ride a bike just like any other child! An adaptive bicycle to improve his quality of life! 


Please keep in mind that GoFundMe asks for processing feeds of 2.9%
+$0.30 per donation! 

All the donations will go to Declan's bike!!! And I will update everyone when I reach the goal to get him the bike! 

If anyone has any further questions, please message me directly,

Thank you! 

Marigona J.