Why we do what we do...

We need your help!!!

As many of you know, on June 1, 2009 we welcomed our beautiful daughter Emily to the world. Eighteen weeks into my term, the doctors diagnosed Emily as having Spina Bifida. Spina Bifida is caused, when around 28 days into pregnancy, a portion of the neural tube fails to develop or close properly.

Doctors are not certain what causes Spina Bifida. As with many other conditions, it appears to result from a combination of genetic and environmental risk factors, such as family history of neural tube defects and folic acid deficiency. In Emily’s case, the cause is unknown. There is no family history, and I was taking folic acid for 10 months leading up to the pregnancy, and during the entire pregnancy.

There are varying degrees of Spina Bifida and Emily was born with the most severe, myelomeningocele. With myelomeningocele, the spinal cord remains open along several vertebrae. Because of this opening, or lesion, both the membranes and the spinal cord protrude at birth. In some cases the lesion will have a sac covering it. Usually, tissues and nerves are exposed, making the baby prone to life threatening infections as well as a host of neurological impairment. From where the lesion begins and below, the spinal cord, nerves, and therefore controlled function are adversely effected. While Emily underwent surgery when she was 2 days old to close the lesion, this closure does not restore the nerves or reverse the condition. The closure simply protected her from infection, which would have been life-threatening.

Spina bifida comes along with a host of medical complications. While Emily has spina bifida, she also has many other medical conditions and complications as a result of the underlying spina bifida. In utero she was diagnosed with hydrocephalus. Hydrocephalus is a build up of cerebral spinal fluid on the brain, and in Emily’s case this fluid cannot drain properly because she also has Arnold-Chiari malformation (a condition in which there is a downward displacement of the cerebellum into the foramen magnum, the opening at the base of the skull). The cerebellum is blocking the natural flow of CSF between the spinal column and the brain. Emily underwent brain surgery at 17 days old for placement of a ventricular peritoneal shunt. The ventricular end of the shunt was passed through the brain and into the lateral ventricle, where excess cerebral spinal fluid is collected and redirected through tubing, into her abdominal cavity for absorption. On day 19 she underwent a shunt revision, to correct the placement of the shunt valve and tubing.

In addition to the neurological diagnosis, spina bifida also causes other medical impairments, such as varying degrees of loss of movement (paralysis) from the trunk through the legs, feet, ankles, toes. The higher the level of the defect the more severe the associated nerve dysfunction and resultant paralysis will be. Many people with spina bifida use the aid of orthodic technology, such as ankle-foot orthotics (afo’s), knee-ankle-foot orthotis (kafo’s), hip-knee-ankle- foot orthotics (hkafo’s), standers, walkers, crutches, and wheelchairs. Emily also has neurogenic bladder and bowel. She has a high pressure bladder for which she is medicated, and we clean intermittent cathertrize her every 3 hours. She has kidney reflux in her left kidney. She will face a lifetime of medical complications, surgeries, and medical management for a multitude of medical conditions resulting from spina bifida.

Emily celebrated her first birthday on June 1, 2010. Since her birth she has undergone three major surgeries. She endures six therapy sessions a week, including multiple physical therapy sessions, aqua therapy, speech/language therapy, and occupational therapy. Her daily life includes a hard regimen of work and therapy to help battle low muscle tone, developmental delays, and help her reach developmental milestones. She has had over 100 doctor appointments the past 14 months and regularly sees a neurologist, urologist, and orthopedist.

Yet despite all of the medical and developmental complications, Emily has taught us so much. Her resilience and determination are only outmatched by her gloriously happy demeanor. It is clear she has a passion and love for life and everything around her. Her curiosity and independence is already starting to shine through. She has shown us what hard work and determination can do: she started army crawling about a month ago, and can pull to stand and bear weight for several minutes. She has taught us what really matters in life. She has taught us what it really means to love.

And, she has taught us that nothing, nothing is impossible. To that end, after much hard work the National Spina Bifida Association was accepted a few months ago as an official charity of the 2010 ING NYC Marathon. This means that 5 runners will be running the marathon on November 7^th, on the condition they each raise a minimum of $5000 (for a team contribution of $25,000). To help reinforce the idea that everything is possible, I am pounding out 26.2 miles in Emily’s honor in the NYC Marathon November 7^th.

But I can’t reach my goal of $5000 without your help!

All money raised will go directly to the Spina Bifida Association, the only national voluntary health organization solely dedicated to serving adults and children who live with the challenges of spina bifida. I also think it’s worth noting that, according to the 2008 annual financial report, only 0.9% of the revenue went to “management and general”. 81% of revenue went into program services, such as education, information and referral, government relations, chapter development, research, and fundraising. This is an organization dedicated to educating the public, and helping the 166,000 individuals (and families) living with spina bifida in the United States.

We would be honored if you would help make this goal a reality.

You can made a donation directly online to the Spina Bifida Association In honor of Emily Keicher by clicking the Link above, "HOW TO MAKE AN ONLINE DONATION.

Orr you can make a check out directly to the Spina Bifida Association and mail the check to 56 Newberry Lane, Lancaster, NY 14086 (email me at elizabeth_webb1976@yahoo.com for more information). We mail checks into SBA every 2 weeks.

To all of those who have already donated, Thank you, Thank, you, THANK YOU!!!! We appreciate your generosity, and your support of the Spina Bifida Association, and Emily, means the world to us!