Maxine is sweet and loving. She likes to kiss and hug as her way of showing affection and love to us and even other people she likes.
She is a happy girl and likes making other people laugh. She is also very brave and is always curious about new things.
A month before her 4th birthday, an unimaginable news has brought the family to go down on their knees for a complete surrender to God’s sovereignty.
Maxine was diagnosed to have Mucopolysaccharidosis Type IV (MPS IV) or Morquio syndrome. Morquio syndrome is considered a Rare Disease.
Morquio Syndrome is a genetic disorder caused by an enzyme deficiency leading waste deposits mainly on bones and joints. This means she will need assistive care for mobility and endurance.
The only treatment for Morquio Syndrome is a lifelong Enzyme Replacement Treatment (ERT), together with physical and occupational therapy, to help manage the fast progression of the complications in the body. At present, the enzyme, Vimizim, is not yet available in the Philippines.
Vimizim is one of the most expensive medicines in the world. Any form of fund raising activities will not be able to cover her lifelong treament and the only way for her to get enzyme is when the government support the availability of the enzyme in the Philippines or to take part in a clinicial trial. Our applications for a clinical trial are ongoing and our main need is for her to be selected for it.
We will need your prayers that everything will take place according to God's perfect will. (1 John 5:14)
While waiting for the possible clinical trial or support of the government, the focus is for Maxine to be able to grow having a quality life, for her to be as independent as possible. This means that majority of funds raised will be allocated for her other therapies and any form of palliative care in the future.
Every peso counts but your prayers weighs more!
We have a page which will give updates on Maxine's progress, but the main goal of the page is to give hope to people who currently has the disease or those who might have it in the future, and raise awareness to the community on Morquio. Visit https://www.facebook.com/Maxines-Journey-for-Acces...
For those with a kind heart to donate, you may use this site if you have a PayPal account or debit/credit card, or do a direct deposit on below account:
Bank Name: Banco De Oro (BDO)
Account Name: Marian Baylon
Account Number: 0024 1018 5017
We are grateful for whatever contribution you can give and we ask you to please include Maxine in your prayers.
God bless us all