Paige's Road to Recovery #pr2r

On August 1, 2015, when Paige was just 12 weeks old, she had her first seizure at home. Other than being born with a port wine stain birthmark on her right upper forehead and scalp, Paige was born healthy and her birth was uncomplicated.  The following days and weeks were extremely scary and intense for Paige, as well as her parents, Maria and Greg.  Following the seizure she was diagnosed with Sturge-Weber Syndrome which is an extraordinarily rare neurological disease that develops spontaneously and has a long list pf potential symptoms, including seizures (epilepsy) and glaucoma (a degenerative eye condition that can lead to vision disturbance).  

Paige was stable on one anti-seizure medication for 8 months but, unfortunately, starting in March of 2016 things started to become uncontrolled. She has spent many days and nights at Boston Children's Hospital and has endured many bumps along her journey.  She, along with her parents, have remained strong and brave throughout the past 10 months.   

Her team at Boston Children's Hospital were hopeful that they could  manage her symptoms, especially her seizures, with medications.  Unfortunately, this has not been successful.  After much discussion and deliberation, her team of doctors feel that surgery is her best option at this time.  Therefore, Paige will be undergoing an intensive neurosurgery on Thursday January 19th, 2017.  The surgery is called a "modified hemispherectomy."  The goal of surgery is to make her seizure free, but that goal is not guaranteed.  


Paige and her parents, along with her big brother Hunter, are very hopeful that the surgery will be the answer they have been looking for.  But that doesn't mean her road to recovery will be an easy one.  And this is where we need your support!

The list of expenses for recovery from this type of surgery are beyond immense.  Some of these include medical bill payments (inpatient and outpatient bills), post surgical rehabilition, continued physical and cognitive therapy, and a list of many other potential needs.  Although Maria and Greg are fortunate to have insurance, some of these costs may not be covered by their plan.  There are so many unknown costs that they may be facing.  


Your monetary support would mean one less stressor that the Shellock Family would have to face.  The previous year has been brutal and the road ahead is going to be very tough.  To share a quote from one of the Mother’s of a child with Sturge-Weber Syndrome, who’s son has also undergone this surgery and is now 1 year seizure free, “ in the beginning, the tunnel is very dark and you can’t imagine any light...and you can’t believe you are putting your child through this...and your heart breaks even more....but little by little the light starts to shine brighter and then one day you are all standing in the light....and the only thing you ask yourself is, why didn’t we do this sooner?”

We are all extremely hopeful for Paige and the rest of the Shellock family.  We pray that this is the answer we have been looking for and that sweet Paige makes a swift and healthy recovery.  And we pray that Maria and Greg can find some peace in the support surrounding them.  And we all hope to be standing with them when they are all finally “in the light.” 

Thank you for your time and attention.  Thank you for your support of the Shellock Family, and especially your prayers and thoughts for Paige and her Road to Recovery.  She is the bravest girl we know!

To learn more about the Sturge-Weber Foundation click this link 

#pr2r #epilepsysucks #sturgewebersyndrome