3 Week Intensive Therapy For Sofia

Hi, my name is Selina. As some of you may know, I have two beautiful daughters named Harmony and Sofia. Sofia will be two years old in October and was born with a severe disability. The medical term for her underlying condition is "Schizencephaly".

Schizencephaly is a developmental birth defect. It is characterized by abnormal slits or clefts in the cerebral hemispheres of the brain. People with clefts in both hemispheres commonly have developmental delays, delays in speech and language skills, seizures, and problems with brain-spinal cord communication.

Sofia has bilateral schizencephaly. (a more severe case) Bilateral Schizencephaly means there are abnormal clefts on both sides of the brain. 

Sofia also has Cerebral Palsy, is very delayed and is unable to lift her own head up. She is unable to sit, stand, crawl, walk, talk, or eat by mouth and is wheelchair bound as of right now. She is also legally blind. 

We do have a great Early Intervention team that consists of physical, occupational, and speech therapy. She also sees Perkins School for the blind therapist. Sofia goes to Mass Rehab center for speech/feeding disorder, and sees Orthopedics for her hips in Shriners Hospital, which is where she will soon get a Hip brace.
She is to wear splints at night, has a stander to help her bear weight and other special needs equipment.  She recently required Botox injections to help relax her very tight/stiff muscles in her legs and arms and will require them every 3 months. She sees many specialists including Neurology, Gastroenterology, Endocrinology, Ophthalmology, a Physiatrist and the list continues. 

I have gone through so many resources and so many options and I will never stop giving up looking for the best options. NAPA center is different than her “in-home” therapies because they offer Neurosuit therapy, and CME therapy which I have heard does amazing things for people with Sofia's condition and to my knowledge is only offered through the NAPA center. You can find more information on these two therapies by checking out there website (http://www.napacenter.org/programs/ )

Once I found out about NAPA center, last year, I created a GoFundMe campaign to help raise money for a 3-week intensive session. I was ecstatic because they had traveling therapists coming for a "pop up clinic" to West Hartford, CT and I was so sure we would get in, but unfortunately, we did not make the cut. I was heartbroken. I called them and there was nothing they could do because of the high demand. I was overwhelmed and felt like less of a parent, always in the back of my head thinking (I need to do something, because we don’t know how much time she has left in this world, I felt like a failure) But, time passed and later decided to use the money that was raised the first time, to help Sofia feel more comfortable while being transported to and from appointments, so we used the funds for a down payment on a Wheelchair accessible van.

I prayed for a miracle to happen and next thing I knew, I had an email stating NAPA intensive therapy was coming to BOSTON! I was overwhelmed with joy! I immediately applied for a 3-week intensive session for 4 hours a day! And I will be giving a down payment of $1,000 as soon as they send me the invoice. I will be posting photos of receipt for your awareness. I’m so honored to say….

Our schedule will be as follows:

Date: June 11 - 29

Timetable: 

9:00-10:00 Feeding/speech
10:00-11:00 Break
11:00-12:00 NeuroSuit 
12:00-12:30 Lunch
12:30-1:30 NeuroSuit 
1:30-2:30 CME

But, as always, there is a “but”. The cost of a 4 hour a day therapy session lasting 3 weeks is EXTREME. Our session will cost us $6,900. After initial deposit of $1,000. Balance comes to $5,900 which is not covered by Medicaid. 

I have no idea where I will stay yet. I have no idea what I will do with my other daughter or where she will stay during Sofia’s therapy sessions, but I do know we have to take life day by day as well as sometimes take risks and chances and this is a chance I don’t want to miss out on. 

I ask that you spread the word, donate only what your able to (if anything at all) share with friends and family, and give my baby the opportunity to experience this well needed therapy. The first time around I felt embarrassed and ashamed to ask for donations but look at it this way. What would you do if it was your child, and you had no other options? I'm pretty sure you would be fundraising as well! So, please don't look down on us. My daughter did not ask to be born with a disability. All we can do is try giving her the best quality of life she can have. 

We can keep quiet and let life take its course (even settle for less), or we can speak up, and reach out and make a difference in someone's life. I chose to speak out on behalf of my daughter. I am her voice (as of now and might always be) and I believe there are still many good people left in this world. So, a big thank you for being a good soul and reading this until the end, and thank you in advance for any donations you may make. 

Periodically, I will be posting photos and videos of Miss Sofia's Journey and any little progress we may make might be all because you took the time to read this. Thank you for keeping up and for all of the support!