Surgical and Medical Support for Jerry Martoinette Dechos

I am from Cagayan de Oro City, Philiplines, a mother of a 7 months old girl Jerry Martoinette P. Dechos. She has been diagnosed with a congenital condition called Trisomy 13 (Patau Syndrome). This is a very rare chromosomial disorder assossiated with severe intellectual disability and multiple physical abnormalities. She. . . . .

I am from Cagayan de Oro City, Philiplines, a mother of a 7 months old girl Jerry Martoinette P. Dechos.

She has been diagnosed with a congenital condition called Trisomy 13 (Patau Syndrome). This is a very rare chromosomial disorder assossiated with severe intellectual disability and multiple physical abnormalities.

She has holoprosencephaly hydrocephalus, full lip and cleft palate and has no nasal bone, no eye coordinarion, and also has epilepsy. She also has midline defect that caused her not developing the nasal bone as well as some areas of the head and face not being covered with skull. Above all of these disabilities, she is a fighter. She has overcome what my OB/GYN and other doctors said that there was a bigger chance that she might not even make it full term at the moment that we found out her situation at 4 months of my pregnancy. Despite what the doctors have told us, me and my husband decided to pursue the pregnancy no matter what. We even were not able to take her home with us right away when I was discharged from the hospital after a C section because she was just not ready yet. This is the reason why we are looking for every possibility to give her all the aide she could get and we could provide to give her a better quality of life.

As of the moment, we are trying to address her hydrocephalus and putting her on Gtube, later will be the repair of her lip and palate.

Her head circumference right now is at 52 cm. While her head is getting bigger and bigger, the pressure inside her head is also going strong that makes her epilepsy worse and more uncontrolable. Having Trisomy 13 and considering the condition of her mouth, she doesn't have the swallowing ability that's why she's on a feeding tube of which her pediatric doctor suggests us having it replaced with a PEG or Gtube. This is to avoid a higher risk of her pneumonia getting worse.

Aside from having the full lip and cleft palate and the absence of the nasal bone, it also appears that her upper gum on both sides are wider than the normal and they have a split on them. There are also some extra muscles inside her mouth that we believe needs to be taken off but we still can't confirm this because we have not seen a dentist yet.

She easily get sick because her immune system is not that strong. She's just 7 months old but she has been admitted to the hospital for 3 times already with at least a week in each admission. We have a weekly appointment with her pediatrician for close monitoring. We also have a regular monthly check up with her pediatric neurologist for her epilepsy. We are still to see other doctors to have her other disabilities checked. Financial matter is really difficult for us. I had to quit my job to take care of her so it's only my husband that's working.

We don't have the exact figure for a Ventriculoperetonial shunt implant surgery but her neurosurgeon mentioned it's anywhere from 250,000-300,000 Philippine peso. We are still trying to get the figure for the PEG placement.

We already have tried and are still trying to reach out to some foundations but there is no response from them yet.

My family is badly needing some financial help to make her life even just a little better.