Phoebe Belle was born 2/13/18 and is 17 months as of 7/13/19, Ms. Phoebe was diagnosed  early November 2018 with a very rare condition called Vein of Galen Malformation. 


What is a vein of Galen malformation?
A vein of Galen malformation (VOGM) is a type of rare blood vessel abnormality inside the brain. In VOGM, misshapen arteries in the brain connect directly with veins, instead of connecting with capillaries, which help slow blood flow. This causes a rush of high-pressure blood into the veins.

This extra pressure in the veins can cause a number of problems:

       
The rush of blood toward the heart and lungs forces the heart to work overtime to get blood to the rest of the body. This can lead to congestive heart failure in some infants.
     
  Blood pressure in the arteries from the heart to the lungs may rise, causing a serious condition called pulmonary hypertension.
       
The high pressure in the veins can prevent the infant’s brain from draining adequately. This can lead to widespread brain injury and sometimes causes severe loss of tissue in the brain.
       
 Some infants can develop hydrocephalus (an enlarged head) if the VOGM blocks the normal flow of fluid in the brain.
         
If not diagnosed and treated early, VOGM can cause severe problems and may even be life threatening.

http://www.childrenshospital.org/conditions-and-treatments/conditions/v/vein-of-galen
(This was a cut and paste of information, its very difficult to explain it.)


We found out about phoebes condition because she had a seizure when she was about 9 months.  While I was at work her dad was at home with her and face timed me asking about what she was doing, after telling him it was a seizure, he rushed her to the hospital. They got the seizure under control and transferred her to Wolfson's Children's Hospital where they could better diagnose her. We were there for about a week while they searched for the issue, after countless tests they finally figured it out after a angiogram.
 
https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/cerebral-arteriogram


She was sent home on seizure medication to ensure they wouldn't happen again. 
The solution for the condition is to perform embolisms on the veins that are not supposed to be there. She has had 3 in total, the first one went perfect, the second was a little different, they went in for a specific vein but could not reach it due to a blockage in the vein they wanted to go through so they embolized another vein instead and she came out of that surgery perfectly fine and unphased.
Its this last surgery she went through that's turned our family upside down. They made an incision in the back of head and went in through the skull, where as before they fed a catheter though the groin, they were unsuccessful in the embolism, the nasal cavity kept collapsing so they pulled back and closed her up. so, she still has that last vein left and will need to under go another procedure again.

( A couple days before surgery)

This last surgery caused the back of phoebes brain to swell up, the doctors do not have many answers as to what happened to her or why it happened or how it happened, only guesses. what we do know is she had a small strokes on each side of the occipital lobe of her brain which controls eye sight, shes not blind but her vision is too blurry to make anything out is what they're thinking , they know its blurry but do not know the extent of the blurriness. She also has damage outlining her brain which is effecting a little bit of all of her, she went from doing normal 16 month old activities to only laying in a bed ,  she no longer  smiles, laughs, walks, stands, sits, holds her head up or eats on her own, and when she does eat its through a tube or from a spoon and they say its mainly a reaction, not that shes really hungry. 
I know I have left out some things about her, there is just so much that she has gone through and had done, multiple MRI's and EEG's to help control break through seizures and check on brain swelling to see if its gone down along with checking for damage from the swelling.

( With the EEG on)
 
Phoebe is the 1% . She is that 1% chance of what could go wrong and the doctor has even said that out of the few cases hes worked on that hes never encountered the issues that shes having.


We have reached a point where the hospital has done all they can and now they want to send her to rehab in Orlando where hopefully they can help her. 

We also have a 7 year old son who is a type 1 diabetic that will be following with us down there, he is starting 2nd grade soon and we need to get down there and get him enrolled and ready for the new year.  During the time we've been here with his sister he's been enjoying summer vacation with his grandma but its not a permanent solution for him. We are a family and will travel as a family.



We need help getting up the funds to keep our family afloat while we are down here getting Phoebe the help she needs and deserves. Life goes on outside of the hospital, we have bills to pay still and need to be able to feed the 3 of us at the same time , all the while needing to try and save for the possibility of a minivan to help transport her back home.

(Fresh out of surgery)

Any donations are appreciated we are in a very rare situation and need help, we were not prepared for this, we came in with the idea we would be leaving in less than a week with our baby the same way she came in but with one less issue (that one vein) and we have been here since July 1st and now expected to move our whole life somewhere else and our baby completely opposite of how she was before.

Miss Phoebe was on the news late July helping raise awareness about her condition and the after effects of her last surgery that she’s still coming back from.

https://www.actionnewsjax.com/news/photos/photos-middleburg-parents-spread-awareness-about-toddler-s-rare-condition/970394884?og_image_sequence=9



(This is Phoebe now)