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I still remember the day we found out that our son had Neurofibromatosis (NF1). I will never forget.

Looking at Cayden, one would only see a vibrant, happy, playful 2 year old who is bursting with life. He is our family's pride and joy! Noone would have fathom what lies within him, what he battles daily, the uncertainty of his future. Cayden Jae, better known as "Rhyno" is a happy, energetic, affectionate little guy who has been diagnosed with Neurofibromatosis Type 1 (NF1).

F.Y.I. : Neurofibromatosis (NF) is a disorder that cause tumors to grow along various types of nerves. NF can also affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body.

He is a very tough and brave little guy and despite all he has already been thru he is ALWAYS charging forward and ready to take on the world!! If you ever met this little ball of energy you would never know that he has NF. He is too busy running, laughing and playing. He is a fantastic little brother and loves playing with his older brothers; Carson (6), and Connor (5).

When he was only a few days old, he developed cafe'-au-lait spots on his body. (They looked just like birthmarks.) I wasn't overly concerned, I thought them nothing more than birthmarks. But within the first few weeks of his life, the doctor started measuring and charting these "birthmarks". We were told that he had neurocutaneous syndome. Neurofibromatosis is a common neurocutaneous syndome.

F.Y.I.: Neurocutaneous syndromes are disorders that lead to growth of tumors in various parts of the body. They're caused by the abnormal development of cells in an embryo and characterized by the presence of tumors in various parts of the body (including the nervous system) and by certain differences in the skin. Although neurocutaneous syndromes cannot be cured, treatments can help manage symptoms and any health problems that occur.

A routine check up led to several referrals to a oncologist, and a neurologist and also a geneticist and over the next few months he had symptoms that ultimately led to a diagnosis of NF1 at age of 9 months. We were told he has macrocephaly, which means that his head is "larger than normal". He had an MRI to check for hydrocephalus. Luckily at this point there has been no sign of hydrocephalus.

F.Y.I.: Hydrocephalus is the abnormal enlargement of the brain cavities (ventricles) caused by a build-up of cerebrospinal fluid (CSF). Untreated, hydrocephalus can result in brain damage or death. Hydrocephalus can be present at birth or triggered by tumours, infection, bleeding in the brain or ageing. There is no cure, but hydrocephalus can be managed with surgery.

Of course, we are always aware and watching for other complications that NF1 can cause. He has to have his eyes checked for fibromas every six months. He continues to have CT Scans and MRIs and appointments with oncologists, neurologist, and geneticsts every three months to monitor for any changes.

Although, Cayden has been really lucky so far, there is a constant question as to how long will he be okay?

Because of the progressive, yet unpredictable nature of NF, we have no idea what Cayden's future holds. We can only watch, wait and try to make a difference. NF will always be a part of his life. To date there are only a few effective treatments. There is NO cure currently for NF!!

Thanks SO much for your kindness and generosity as we continue on Cayden's NF Journey and see where he takes us!!

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