Sunday, March 03, 2013

The Lost Prince and Our Sweet Princess Kendal

I just watched this movie the other night.
I got it from the library last week.
I am not sure what I was looking for in the "L" section, but I saw this and it intrigued me.
First because it is historical and takes place during World War I, second because it is based on a true story of the Royal family in England, and third, because it deals with epilepsy.

This movie, The Lost Prince, is about Prince John, the youngest son of King George V and Queen Mary of England.  He suffered from epilepsy and also a learning disorder, possibly something similar to what we refer to now as autism.  It was a fantastic movie.  One reason I also enjoyed the movie was because it portrays the relationship with the Romanov family of Russia, which is of course interesting due to the Anastasia stories.  The movie made me cry a few times, and laugh a few times as well.  
Prince John was born in 1905 and died in 1919 at the age of 13.  His parents, the King and Queen of England were in the middle of World War I when John was suffering from the worst of his seizure episodes.  He had a devoted nanny, Lalla, who I love in the movie.  She is incredible.  

 Many know that I have my own little story with epilepsy.  Kendal, my now 7 year old, started having bizarre seizures in March of 2007, a few months prior to her 2nd birthday.  The seizures escalated to around 15 to 18 a day in just a few weeks time.  She was diagnosed with 'infantile spasms,' a severe form of epilepsy in infants and young children. 
After a super rough summer and a whole mess of super expensive drugs, the seizures stopped on July 4th, Independence Day 2007.  Since that time, she spent 4 more years on anti-seizure meds without one recurring episode.  She hasn't been on anti-seizure meds for almost 2 years and we are so grateful.

The National Institute of Neurological Disorders website says this:
While epilepsy cannot currently be cured, for some people it does eventually go away. One study found that children with idiopathic epilepsy, or epilepsy with an unknown cause, had a 68 to 92 percent chance of becoming seizure-free by 20 years after their diagnosis. The odds of becoming seizure-free are not as good for adults or for children with severe epilepsy syndromes, but it is nonetheless possible that seizures may decrease or even stop over time. This is more likely if the epilepsy has been well-controlled by medication or if the person has had epilepsy surgery.

Kendal's particular type of epilepsy doesn't have such great statistics.  About 70% of the infants that have infantile spasms never progress mentally beyond the age when the seizures began to occur.  
We could have a near 2 year old in a near 8 year old body.  Watching this movie about a real boy 100 years ago, makes me so so so grateful for modern medicine and the knowledge that we have today.
The picture of Kendal I posted is from the state of Utah All Girls Chess Tournament held over the weekend where she finished 8th place in the 1st grade division.  We are so so blessed.

This photo is of the British Royal Family children.  John is the youngest child, found on the front left.
The movie only portrays his brother George, also on the front row.
Prince John was kept hidden from much of the public eye, especially when he got older and his family and the doctors realized he wasn't going to get much better and overcome epilepsy and his learning disability.  He spent most of this time with the nanny Lalla, and the last few years of his life were spent out in a country home away from the palace and the city.

This is Prince John and Lalla, whose real name was Charlotte Bill in 1912.
John would have been 7 or 8 years old here.  
That is how old my Kendal is right now.
I am incredibly grateful that we understand health issues more than we did 100 years ago.
I am grateful for the medicines that made all the difference for my Kendal and kept those erratic brain waves under control so her brain could develop and continue to grow.
I am grateful we don't have to hide her away and she can be accepted for who she is, unlike 100 years ago.
I am grateful we can look forward to a long, happy, fulfilling, normal life with my spunky Kendal girl.

1 comment:

Amy said...

Aw, what a sweet post. There are many times I wish we lived 100 years ago, but this post sure illustrates what a blessing it is that we live today. Gorgeous Kendal!


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