Our beautiful little angel Alekksis Esperanza, was born on the 21st of January 2009. After 9 months of almost a near perfect fourth pregnancy with no major events, nothing could have prepared us for the moment we learned that our baby girl was born with serious complications.

Complications

1. Severe Hypotonia
2. Flexion Contractures of her upper and lower limbs
3. Generalised brain atrophy
4. Microcephelly
5. Seizures
6. Vision Impairment - (not fixing or following)
7. Hearing Impairment - (not responding to sounds; failed all hearing tests to this day)

Alekksis' thorough genetical tests have been negative: she is still undiagnosed! The doctors told us that Alekksis will have complicated needs, with developmental and motor skill delays. Till this day, Alekksis has severe global developmental delay, infantile spasms, and generalised onset brain atrophy.

First Three Months

The first three months of her life at home, she had to be fed through a NG tube. Her speech Pathologist set out some excersises to do on Alekksis' mouth, for her to be able to learn to suck and swallow. Towards the end of the third month, she finally got the idea and began taking oral feeds from a bottle. It was very exciting for all us to see Alekksis reach such an important milestone!

Throughout the pregnancy, Alekksis barely moved or did any sudden kicks or stretches in the womb. Something we never thought of suspiciously at the time. But, her lack of movement caused her to have twisted limbs feet and hands and stiffness (contractures) from being in one position for so long. As a result, she had to have plaster from above the knee to her feet. The Occupational Therapist also started on stretches and splints for her hands. This went on for months, using plaster then moving up to special splints and special corrective shoes. Her legs eventually became flexible and relaxed. Her feet still need more work. Her hands also need to be on splints through the day and night.

Seizures

From 3 months of age, Alekksis began suffering from seizures. The seizures were so intense and frequent (all day and all night) that she was constantly crying and vomiting and unable to sleep! This went on for three long months without anyone picking up the condition. After weeks and weeks of many prayers and desperate researching, many doctors told us that Alekksis was NOT going to get any better, that the seizures were caused due to her brain deteriorating. Other doctors watched her have violent seizures but were unable to provide any help; we finally found the answer on the web! They are called 'Infantile Spasms'. We immediately booked her in to see the Neurologist. The EEG results proved it, she was having seizures!

Six Months

At 6 months of age, thanks to the wonderful intervention of Dr. Robert Smith she began taking phenobarbitone , which resulted in a significant reduction in seizures to the point that she would only get a few brief mild episodes a day. It was an answer to prayers! A miracle! We cried tears of joy! Alekksis finally was able to sleep again, and she did so, all night, every night! Even had little cat-naps after her feeds through the day. She even started putting on weight for the first time!

With growth spurts, her dose of Phenobarb becomes a little deficient and her seizures tend to increase. This happened when she was 8 months old. She started getting much stronger and very frequent seizures through the day and night. The seizures made her vomit every time! So most of her feeds weren't staying down. This caused Alekksis to become severely dehydrated and lethargic; she had to be hospitalized immediately! Blood tests confirmed that the Phenobarb levels were very low.

Alekksis is now 10 months old. She is unable to hold her body on her own. She has never used her hands. She cannot hold her neck up. She is like a little rag doll. She is almost 10kg, but feels so much heavier when held because of her condition, she is pretty much dead weight. Alekksis has never smiled. She does however make very faint baby sounds.

Alekksis still has difficulties with her vision. She is not fixing well but occasionally follows a light. She remains with her eyes elated for a large part of the time. Eye Specialists have said to us that her optic nerves are pale. Whilst the structure of her eye is totally in tact, what her brain interprets it is seeing is unknown.

We are currently in the process of getting referred to Westmead hospital in Sydney, to get second opinions from other specialists and neurologists.

Recently we have been in contact with The Australian Institute for the Achievement of Human Potential which is an organisation devoted to improving the quality of life for brain injured children. The AIAHP works with children by teaching their parents about brain injury and how to enhance the development of their child through the practice of specialised techniques.

The consultations, the equipment and the time required to help Alekksis are very costly and time consuming. Realistically we cannot manage on our own; that is why we have decided to reach out to people and organisations that may help raise funds to support Alekksis.

For this reason we have launched this website, because we feel the need to tell you Alekksis' story and her fight to survive in the hope that as many people as possible will help us and make it possible for her to lead as near ‘normal' life.

Thank you for taking the time to read about our beautiful Alekksis and we hope that you may take a moment to learn how you can help our little angel!

Marlene and Jonathan Galindo