"Your hand opens and closes and opens and closes.
If it were always a fist or always stretched open, you would be paralyzed.
Your deepest presence is in every small contracting and expanding, the two as beautifully balanced and coordinated as bird wings."
Iolani Azul was born on February 18, 2009 in Oakland, California with congenital hydrocephalus and had suffered a stroke in utero . We were told that because of the extreme brain damage it caused she would most likely be a vegetable if she survived birth. Mark, her dad, and I, JoAnna, were so scared but we decided to take the challenge because we had already fallen in love with Iolani while she was growing inside of me. When she came out, weighing 11 lbs and 23 inches and screaming at the top of her lungs, we knew we had done the right thing by keeping her. But our battle had just begun...
Iolani had brain surgery at 8 days old to place a shunt in her brain. Leading up to this surgery we were told that her neurological damage caused her to have cerebral palsy, hemiplegia and visual impairments, which meant that the whole right side of her body was paralyzed. Once we left the hospital after weeks and weeks, we went home exhausted. But we were ready to start the hard work of helping Iolani walk, talk, and use the limited vision she was born with to become as independent as possible.
She began seeing an Early Interventionist from Easter Seals who supported her overall development, a Physical therapist, an Occupational therapist who focused on her hemiplegic (right) side, a vision specialist from Blind Babies who supported us in trying to figure out the extent of damage and how to support Iolani maneuvering the world with her limited eyesight. On top of that we had constant visits to the Neurosurgeon, Neurologist (who not only ended up monitoring Iolani's shunt but found out at 3 months old she had epilepsy and was having daily seizures), Opthamologist, Pediatrician, High Risk Infant Clinic, and other specialists depending on the region of her body that was affected by the hydrocephalus/stroke.
Over the years of constant doctor and therapy visits, Iolani has beaten most of the odds against her. At 5 months, Iolani spoke her first word, "mama" (which we were told she would NEVER do). Following that her vocabulary blossomed and she hasn't stopped talking since. After her 2nd birthday she decided to break down the huge obstacle of walking, something that the doctors had told us she would NEVER do. It took a year of practicing to be stable enough on her feet to completely independently walk but she got there. At 3 she began pre-school (once again, which the doctors said she would NEVER do) and has been happily asking us to take her to school every day since.
However, with all these triumphs, Iolani Azul, at almost 4 years old, still cannot do many of the things other children her age are able to do. Iolani cannot stand up on her own. She cannot dress herself or put on her own shoes. She cannot play on the playground by herself. She has very bad balance. Her vision is completely cut-off on both right sides of her eyes (thus running into things, not seeing when people are coming at her, and falling constantly). She has a very hard time feeding herself with utensils. And when faced with a fall or a seizure she is not able to use the right side of her body to help prevent or sustain her.
This is what had led us to create this campaign. We believe that Iolani's life could be exponentially better if she was able to fully use her right hand and arm. We've done our research and feel the best solution is to send her to constraint therapy camp. A smaller, less intensive, beginner camp will be happening in San Francisco from January to February but the more intensive therapeutic camp will happen in New Jersey in July of 2013. Our hope if we reach our fundraising goal is to send her to both camps as the damage is so extensive and the benefits would be so great.
However, there are many components to sending Iolani to camp, specifically Camp Helping Hands in New Jersey. I, mama, will have to take 2 months off work to attend the camp with her thus losing my income for that amount of time as well as the travel and lodging expenses.
Each camp costs $5000 = $10000 (without lodging in New Jersey)
Subletting a NJ apartment/studio = $1500 (hopefully not more than this)
Traveling cross-country by car (as Iolani is unable to fly for now because of the extreme pressure in her head and her lack of expressive language) = 3000 miles each way = $3500 (gas, tolls, etc)
Lodging cross-country = 1 1/2 weeks on the road to and from = $2500
Once on the East Coast we have to drive each day to and from camp to home = $250
Food for entire 2 months = $1000
Travel Medical Insurance + any Emergency visits Iolani might require during the 2 month trip = $1000
Loss of JoAnna's income = $4000 (for 2 months)
Hopefully you are able to see how costly the trip will be. However, we feel very confident after seeing other children who have attended the camps, before and after. The level of independence that comes after attending the camps is amazing.
We're so incredibly humbled to ask for this support to help our little girl overcome yet another challenge which we were told she would NEVER do. Use her right arm (right side of her body) to support herself.
We thank you all in advance for any and all support you can contribute during this fundraiser. We are blessed to have a supportive community of family and friends and we ask that you share this campaign far and wide.
With all the appreciation in our hearts,
Mark, JoAnna and our little miracle, Iolani Azul
(P.S.- Other ways to support if you cannot monetarily are if you have connections to hotels/motels/places to sublet in New Jersey, gas cards, food gift certificates, Metro Cards in New Jersey/New York, car rental discounts to rent a more comfortable and safe vehicle for traveling cross-country. Anything and everything is appreciated!!)