Alicia´s story

On February 9^th 2008 our beautiful baby girl, Alicia Taylor Levesque, was born. She weigh 3695 g and was 50 cm long. Alicia's head was field with dark hair and she had gorgeous big blue eyes. We feel in love with her as soon as we laid our eyes on her!! We love being Alicia's parents, she brightens up every day for us! She is such a happy little girl, she has a great attitude towards life, she is always laughing and she takes on new challenges with a big smile on her face!

It is a big change and challenge to become parents and it became even bigger for Ross and I since our little Alicia has special needs. Alicia is diagnosed with a syndrome called MPPH syndrome. This is a very rare syndrome and so far there is only 8 known cases in the world.

For us everything started when Alicia was around 2 months old. We noticed that Alicia wouldn't focus her eyes on us, her toys or anything. Eventually we got an appointment with a children's doctor at the hospital in Malmö. He agreed that her eye movements were not as they were suppose to be and he signed us up for a couple of different tests. One of the tests was an EEG to exclude that she had epilepsy.

We had never seen Alicia have any seizures and we felt calm before the EEG. The same morning as we were suppose to bring her in for the test I woke up early in the morning and saw Alicia having small seizures were she would just freeze and stare up towards the ceiling. This really scared us and we rushed to the emergency room with her.
I guess from here it just went on. We got admitted to the hospital for a couple

of weeks. Alicia had to go through a lot of different tests - EEG's, a MRI, bloodtests, medicines and so on. This was a very hard time for Ross and myself, seeing all this happen to our little baby girl. We were so thankful for all the support and well wishes we got from our family and friends.

The doctors told us that Alicia has MPPH syndrome. The syndrome is causing her vision problems, her delayed development and had caused her seizures which are controlled by medicines today.

When Alicia was 5 months old she got Infantile spasm, this is a very serious type of baby epilepsy . It is very important that these seizures gets treated as fast as possible. Alicia had to get on some very heavy cortisone based medicines that made her feel very uncomfortable. She went back in her development and was like a little newborn again. She could not even hold her head up by her self. She took these medicines for 5 week and this was an awful time for us. Alicia was crying and whining 24 hours a day so Ross and I had to sleep in shifts. Ross would stay up all night with her and I would get up early and take over. It was really tuff on us but we finally beat it and the seizures stopped.

After Alicia got of the medicines she slowly started to come back to us. The first time she smiled to us again we broke out in tears... She is learning new things but it comes in a slow pace, but it is coming!!! We are so happy with her progress and everything doesn't feel like a big dark hole anymore. Alicia is a fighter! She inspires us so much with her wonderful attitude and she has taught us not to give up. We need to have patience, a lot of patience, and things will come!!

Right now we are just enjoying spending all our time with our little sunshine. We are trying not to think to much about the future and just enjoying each day as it comes. We love our little Alicia so much and would do anything for her!!!