On December 22, 2016 we were blessed with a beautiful little girl, Nina Maeve, who was diagnosed one month later with Down Syndrome. This came as a total surprise and we are honored that she chose us to be her family.
With that diagnosis also came the realization of needs that must be met to keep our family cohesive, calm and loving. Our family is Marta, Edward, Romeo and Nina.
Nina is a bright light. She is incredibly social, very funny and very strong willed. She demands 200% of our attention at all times. She has all the typical health concerns of a child with Down Syndrome, which we are all still learning about every day.
Romeo is a fantastic five year old who has been by Nina’s side since day one. We are doing our best to help him navigate the challenges of being an older brother to a special needs baby who needs our undivided attention at all times. He is very happy about Kindergarten at Center School.
As a business owner and sole earner, Edward has been working extremely hard including evenings and weekends to provide for the family, and the extra costs of a special needs child.
In late July, Edward's business suffered a financial loss of $8,000 on a job in Vancouver that he was forced to walk away from near completion, because it would have kept him seperated from the family for 6 solid weeks.
In Edward's attempt to give Marta respite during some of the more challenging days as well as be present at most of the medical appointments, bills have piled up. This is compounding feelings of anxiety and stress for the entire family. In an effort to catch up on these bills, the special care for Nina feels out of reach.
Edward has completely hit a wall physically. He is determined to cap his working hours at 40hrs/week so he can be present for his family, but the stress and sleep deprivation have caught up with him.
Marta is exhausted physically and emotionally. Her plans to open a Music Center on Salt Spring Island have been postponed indefinitely due to Nina’s health concerns. As many are aware, sleep is of utmost importance to new mothers, and Marta is getting little to none of it, adding to an already present postpartum depression.
We are humbly asking for loving support and if possible, for financial help as well.
Slowly but hopefully, we are piecing together Nina’s team of clinical and medical specialists, working together to ensure that her needs are being met.
We are in meetings with cardiologists one week, genetisists the next, emergency room scares, followed by gastro feeding specialists most recently. Alternative medicine has also been helpful, but pricy. These meetings are heavy, as with each one we are learning about possible long time Down Syndrome issues like leukaemia, hearing loss and blindness and more. It is hard to attend these meetings alone with 2 children.
Our social worker is helping us identify and fill out all the necessary forms so that we can receive minimal funding from the government, however this is a very slow process. Many services needed for Nina are not offered on Salt Spring Island, so these medical appointments require extensive travel by boat and car and take all day if not longer. At the moment this is financially not viable.
The effects of having a special needs child go far beyond these meetings. Nina has had extreme digestive health issues for the past 2 months taking up all our energy and time.
She sleeps minimally due to severe intestinal discomfort, typical of some Down Syndrome developmental issues. She demands our constant attention and cries for it intensely. If left alone for a longer period of time (the time it takes to do the dishes, for example), the cry then turns into a rocking, seizure-like sate called "Unusual Self Regulations Strategy" and is how some Down Syndrome children soothe themselves. It is both grueling and terrifying and we have nicknamed it "the roar”. She is soothed only by physical contact which means Marta carries her on her back most of the day, when home alone with her.
Because of her low muscle tone, Nina, weighing in at a healthy 22lbs, has the body mass of a thriving 8 month old, but physically her body is developing slower and is a few months behind. Her internal system also has low tone and not quite managing digestion, which means she is slumped over, uncomfortable, colicky and suffering from intense acid reflux most of the time. It wakes her up and sometimes culminates in long projectile vomit sessions which leave her body even weaker and hard to keep upright for proper breathing.
This entire experience has been exhausting, overwhelming and is taking a heavy toll on our energy and sanity. Our loved ones who have encouraged this Go Fund Me campaign were the first to point out the hard truth - that our family is in crisis. We just couldn’t see it.
These are some of our goals for the Go Fund Me campaign -
- Help pay outstanding bills and rent
These bills are: BC Hydro, phones, seasoned dry firewood, home rent and Medical Service Plan (MSP).
- Counseling for family members
- Develop a routine respite care plan for Nina, Marta, Edward and Romeo
- Develop and implement a successful nutrition plan specific to Down Syndrome digestive issues
- Have the ability to be present at all the medical appointments
- Physical and mental developmental tools for Nina
- An emergency fund
- Moving costs to suitable housing - a less expensive, one level, lease to own living situation on our beloved Salt Spring Island would be ideal.
Any and all contributions would mean the world to us and go a long way to ensure that we are able to thrive together as the loving family that we are.
With love and gratitude,
Marta and Edward McKeever
- Jen, Matt and Sia Robertson
- Patricia Pawlak
Salt Spring Island, BC