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$1,160 of $1,500
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16 donations

This fundraiser ended on 06/15/10

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Delaney is an amazing one year old girl. She loves to play with her sisters and pretend that she is a mommy. She is hilarious and sweet an

 Delaney is an amazing one year old girl. She loves to play with her sisters and pretend that she is a mommy. She is hilarious and sweet and lights up any room that she walks into. She fills our hearts with joy and constantly reminds us of what is truly important.

Though at a glance it may not be apparent that Delaney is any different from other children her age, she has multiple medical problems that impact her daily life. She has been diagnosed with; hypotonic cerebral palsy, connective tissue disease, epilepsy, reactive airway disease, frequent infections/ fevers, and poor vision. She is currently undergoing a long process of testing and observation for a high likelyhood of mitochondrial disease.

In other words many of Delaney's bodily systems do not function properly. Her muscles have low tone which causes her muscles to be under reactive and cause weakness throughout her body. Her connective tissue is too lax which causes her joints to be loose and unsupported. The combination of the two of these conditions causes her chronic joint pain and muscle fatigue. Things that you and I take for granted Delaney has to work really hard to acheive.  Delaney has also recently started having tonic-clonic (grand-mal), absent (petit mal), and myoclonic seizures. She has since then been diagnosed with epilepsy. It is so hard as a parent to watch your child go through these things.

Delaney requires many medical interventions and therapies. She has a large team of Drs and specialists, some of which are four and a half hours away, that she sees on a regular basis. She wears bracing on her legs, and requires a walker to lessen her muscle fatigue. She also requires daily medications for; seizures, breathing, twitching/jerking, and allergies. She wears glasses and needs all of her liquids thickened so that she does not aspirate. She will require lifelong physical and occupational therapy to keep her body active and functioning properly.

One would think that if a child needs medical interventions that insurance would be there to help, but it is simply not the case. Our insurance does not cover most chronic disorders. This leaves us paying a lot of costs out of pocket. There is nothing more devestating as a parent then knowing that your child needs things you are not able to provide.

In a typical year Delaney's expenses are between $8000-$10000 out of pocket. This includes; medicines, supplies, equipment, testing, travel, emergency room visits, inpatient and outpatient care, and therapies. This is a goal that is not achievable without the help of friends and family.

We have set up this page to give people a place to donate if they can. The money will be going directly towards Delaney's care and will truly be a blessing to our family. Any little bit helps. I thank you for taking the time to read this, and have a blessed day.
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