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Family from Peru finds Angelman family in Minnesota

June 10, 2020

Family from Peru finds Angelman family in Minnesota

Kim & MapyWritten by: Kim Rossow & Mapy Estupiñan Perez

 

Greetings from Minnesota! 

I’m Kim Rossow, an ASF Family Champion in Minnesota.  It is both my personal and professional passion to connect with families and support parents in navigating their new world of raising a child with Angelman syndrome. 

As an ASF Family Champion, I focus first on just being present to hear the diagnosis story.  We all have one…many of us find it helpful to tell and re-tell that story.  Parents seem comforted as I nod along, sharing that I can relate. As many of us can remember, just having another AS-parent in your living room or on the other end of the phone gives you hope to get through those first few days. Second, I make sure the family is aware of all the amazing resources we have through our umbrella organizations, such Angelman Syndrome Foundation & FAST, and the social media pages. And finally, I make sure families know how to access formal supports through their school districts, counties and state services. My angel is now nearly 14…most of the newly diagnosed families I get to meet are raising toddlers or young children with Angelman Syndrome and it absolutely fills my heart with joy to meet these little Angels.  It always brings me back to those first emotional moments & sleepless nights/days when we were first diagnosed.  If my involvement as an ASF Family Champion can do anything to bring comfort to a family or help them find a new resource and get more connected to our Angelman community, then I feel I’ve met my purpose for the day. 

What I didn’t realize when I first started as an ASF Family Champion is how much this role could change my life.  In December 2019, I was asked to connect with a new family in MN and I was delighted to see that they lived in my community!  Another Angel in our school district and in town – how fun!  I first met Mapy & Oliver and their beautiful daughters Vania & Tiara in their living room…. Vania was already 6 years old and was just diagnosed.  Their story grabbed me… loving & attentive parents on an unbelievable journey from Peru for an answer about their daughter’s condition that lead them to Chaska, MN.  And now I get to be a part of their story – truly, what a blessing. 

Their story is best told by Mapy:

 

When my daughter Vania turned 3 years old, she had just started walking on her own.  She did not speak and her gross motor skills were delayed and she drooled excessively.  We lived in Lima, Peru – and no one was able to give us an accurate diagnosis or explanation for what was going on with her.  Because her head was growing normally, all the doctors ruled out any genetic diseases.

Oliver & I started looking for a school for Vania but it was heart-breaking.  The state schools do not receive funding support and there are not enough professionals to attend to each child – many schools are simply too full to accept more children.  In the private schools, the inclusion program is poor – while they would accept Vania, they required us to send a professional with Vania to take care of her throughout the day.  We were depressed by the situation.

Oliver had visited Minnesota, where his sister lives and who has a daughter with autism.  During the stay he was able to visit his niece’s school.  He was so amazed, he returned to Peru determined to bring us all to MN to begin the process of living here so that Vania could go to school.

We left our life in Peru – our work, friends, and above all, our parents and brothers.  We left everything we knew and took a leap to find a better life for Vania in MN… a life with education, healthcare, activities, & friends.  In Peru, we had no answers on Vania’s health and Vania was isolated from other children.

We were amazed that by the time we arrived in MN, Oliver’s sister had already arranged for Vania to start school – they were ready for her to start immediately and it was so wonderful for her to have teachers and socialization!  We started looking for a lawyer to start the paperwork to live here permanently.  We are now applying for humanitarian asylum in order to be allowed to stay in the United States – Vania’s health and well-being are dependent on being here.  There is nothing suited for her in Lima. She would be isolated from other children and we would have no school for her. 

During this time of settling into school in MN, I found an article on the internet about children of celebrities with special needs and noticed the story of Colin Farrell – when describing their son’s syndrome, it was like he was describing my daughter Vania!  We couldn’t believe it – it was the first time that I had read about Angelman Syndrome. That day I looked for videos and articles, and it was so surprising… I sent all the information to my husband, his sister, and my brothers in Peru. My husband said, “Yes, Yes!  They describe Vania!” I wanted to wait to be sure, as I still hoped it wasn’t a genetic condition.

From that moment I followed the ASF webpages and everything related to AS. It took two years for us to have health insurance in Minnesota and for Vania to be able to get the genetic test that resulted in Angelman syndrome. When we received the news, I needed support from my husband; he better understood the syndrome, but I had kept slight hope that they would tell us it was not genetic and Vania could have a normal prognosis. 

But, from that day on, our lives improved because now we have Vania’s diagnosis.  It helps her – and it helps her teachers at school know how to support her. I contacted the ASF and we were able to meet a wonderful family who showed us how wonderful Minnesota is for Vania and introduced us to all the adaptive and inclusive fitness and social activities she could be a part of.  It was great to meet them because we are on the same path. Vania now has a 10-month-old sister and they play and have a lot of fun. I am thankful for being here, although our fate is uncertain… our asylum case was rejected and we have until January 2021 to appeal and make our case for a continued home in Minnesota. But we will continue fighting for a better quality of life for Vania. Thanks to the Angelman Syndrome Foundation because I was able to meet Kim and her beautiful family, who inspire us.

 

Truly, it is Mapy & Oliver’s story that inspires us and has touched us beyond measure.  As her ASF Family Champion, I am able to help Mapy & Oliver access resources in MN they wouldn’t otherwise know exist…together we have submitted an application to a special needs foundation and received a small grant to pay for fitness activities for Vania; we have worked with our church and friends to raise money for a special needs stroller and simple therapeutic/recreational tools for Vania; and we have visited other community support programs that have helped us leverage the assistance that families need during transitions and uncertain times.

Lucky for us, Mapy & Oliver and my husband Dustin & I (and our 5 combined children!) are now dear friends; Mapy and I talk/text most days and we see each other regularly.  One of our favorite moments was the day we realized their six-year-old Vania was born (in Peru) on the exact same day as our six-year-old son Lucas was born (in Minnesota)!  We took this as yet another obvious sign of our meant-to-be crossings that would connect us for life. We are inspired by Mapy & Oliver every day, and admire their hard work and tireless efforts to give Vania the best life possible. 

And aren’t we lucky they chose Minnesota?